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Washington, DC Update 4/20/23
Legislative Updates
House and Senate lawmakers will return later today to kick off a busy two-month stretch of legislative business.

Debt Ceiling: Yes, this conversation is still going on in April.
House Republican leadership is in the process of hammering out the final details of legislation that would raise the debt ceiling for one year in exchange for a slew of GOP budget priorities. According to the latest intel from Capitol Hill, House Republican leadership is eyeing a vote on the debt ceiling legislation at some point next month, but timing remains in flux. Meanwhile, the administration has been adamant that it wants to see the full House GOP budget for fiscal year (FY) 2024 before engaging in additional talks. With both sides entrenched in their respective positions, there is little likelihood of reaching a bipartisan agreement before the "X date", which is currently projected to fall at some point between late July and September.

What does this have to do with CYSHCN?
Notable policies that are expected to be included:
  • Energy provisions contained in the House-passed Lower Energy Costs Act (H.R. 1);
  • Rescinding unspent COVID-19 relief funds;
  • Capping non-defense discretionary spending based on FY 2022 levels;
  • Work requirements for able-bodied recipients without dependents in Medicaid, the Supplemental Nutrition Assistance Program (SNAP), and the Temporary Assistance for Needy Families (TANF) program;
  • The House-passed Regulations from the Executive in Need of Scrutiny (REINS) Act; and
  • Blocking the Biden administration's student loan forgiveness plan, among others.

Educating versus Lobbying
As the F2F Education campaign gears up for the push to reauthorization of the program, this AUCD one-pager may be helpful in clarifying that sharing about the impacts of the F2F funding in your state is education and permissible as an employee. 2022_Lobbying versus Educating.pdf (aucd.org)
Unwinding of the Public Health Emergency & Medicaid Continuous Coverage
President Biden signed legislation on April 10 immediately ending the national emergency related to COVID-19. It is important to note that this is not the same as the COVID-19 public health emergency (PHE), which is set to expire on May 11. The end of the national emergency does not change the expiration date of the PHE and does not affect any unwinding plans related to the PHE. Existing pandemic-related Medicare and Medicaid waivers currently in effect remain in place until the end of the PHE.

HHS: Amend the Declaration Under the Prep Act
HHS Secretary Becerra announced that in the coming weeks, he will issue an amendment to the declaration under the Public Readiness and Emergency Preparedness (PREP) Act for medical countermeasures against COVID-19. The PREP Act declaration has provided flexibilities and protections for individuals and entities who have been involved in providing these critical tools that have helped the United States get to a better place with COVID-19. For the past three years, much of the health care landscape—including pharmacies—has relied on these flexibilities and liability protections.

The amendment is likely to read as follows:

“Over the past three years, the PREP Act declaration has provided liability protection to manufacturers, distributors, and other organizations conducting countermeasure programs and providers administering COVID-19 countermeasures. This coverage includes liability protection for those entities engaged in manufacturing, distribution, or administration of COVID-19 countermeasures (such as tests, treatments, and vaccines) purchased by the Federal government for administration at pharmacies and other locations.

All COVID-19 vaccines and treatments for which distribution is currently directed by the United States Government (USG) are covered by PREP Act protections and flexibilities. Additionally, COVID-19 tests that are administered through the USG Increased Community Access to Testing (ICATT) program are covered by PREP Act protections and flexibilities. 

Even once vaccines, tests, and treatments move away from being distributed under a USG agreement as they transition to traditional pathways for procurement, distribution, and payment, PREP Act coverage will not automatically terminate in all instances. Rather, the duration of PREP Act coverage for COVID-19 countermeasures will be determined by the terms of the PREP Act declaration in place at the time.”

By issuing this amendment, the Secretary of HHS intends to allow pharmacies to continue their critical roles in the response, even after certain products transition to traditional health care pathways. The end of the COVID-19 public health emergency alone does not automatically terminate PREP Act coverage for countermeasures. This link to an HHS Fact Sheet will break down some of key planned changes.
Secretary Becerra Letter to Governors regarding intent to Amend PREP Act.

CMS: Chart of State Unwinding of Medicaid Continuous Coverage Timelines
CMS released a chart of anticipated state timelines for initiating unwinding-related renewals. As we explained in a recent blog post, during the pandemic, significant changes were made to Medicaid enrollment and eligibility rules to promote continuous health insurance coverage. The end of those pandemic-specific changes is known as “unwinding.”

If a state determines someone is ineligible for Medicaid and CHIP, states can terminate their coverage starting on April 1, 2023. However, state-by-state timelines will determine when someone can lose their coverage for procedural reasons, such as not responding to a renewal form. Those anticipated timelines are laid out in the new CMS chart.

HHS: Civil Rights Protections and Language Access 
On April 4, the Department of Health and Human Services Office for Civil Rights (OCR) released a letter reminding states of their obligations under federal civil rights laws as they start unwinding-related renewals.

Under federal civil rights laws, states are required to take reasonable steps in communications with Medicaid and CHIP enrollees and applicants to provide meaningful language access for individuals with limited English proficiency (LEP) and ensure effective communication with individuals with disabilities. These services must be provided free of charge and in a timely manner.

Reasonable steps to provide meaningful language access may include: 
  • Translating documents written in English, such as notices pertaining to renewals and other eligibility actions during the unwinding period, by a qualified translator.
  • Provision of oral language assistance from a qualified interpreter, either in person or using remote communication technology like telephone, internet, or video. 

Effective communication might require providing appropriate auxiliary aids and services, such as: 
  • Braille
  • Large print
  • Captioning
  • Plain language explanations
  • Qualified sign language interpreters
  • Qualified readers
  • Qualified speech-to-speech transliterators
  • Accessible websites

Guide: End of HCBS Flexibilities
Advancing States, the National Association of Medicaid Directors (NAMD), and the National Association of State Directors of Developmental Disabilities Services (NASDDDS) released a new guide to help to state Medicaid and aging and disability agencies prepare for the end of pandemic flexibilities in Home and Community-Based Services (HCBS).
The guide outlines how states used these emergency flexibilities (most often through the 1915(c) Appendix K authority) and which of those changes can be added to states’ 1915(c) waivers, should states choose to do so. Many of those flexibilities provided benefits that can improve HCBS for people with disabilities even beyond the pandemic, making this is a key resource for disability networks as they work with their states, and advocate for flexibilities they believe will benefit the communities they serve.

CMS Unwinding and Returning to Regular Resources Webpage

ACL Unwinding Resources

Recording of How Are State Medicaid Programs Approaching the Unwinding of the Federal Continuous Enrollment Provision?: A web briefing from the Kaiser Family Foundation notes that states’ existing enrollment and renewal procedures and their differing approaches to the unwinding will have major impacts on Medicaid enrollees, state spending, and broader health coverage trends. 
From the Administration
White House: Caregiving Executive Actions
On April 18, 2023, President Biden announced the most comprehensive set of executive actions any President has ever taken to improve care for hard-working families while supporting care workers and family caregivers. Joined by people with disabilities, family caregivers, long-term care workers, early educators, veterans, and aging advocates, the President signed an Executive Order that includes more than 50 directives to nearly every cabinet-level agency to expand access to affordable, high-quality care, and provide support for care workers and family caregivers.

CMS: Proposed Rule to include DACA recipients
Last week, President Biden announced the plan to include Deferred Action Childhood Arrivals, of “Dreamers,” as lawfully present so as to be able to obtain Medicaid and other health coverage. Read this Politico Article for more information and HHS Secretary Becerra response to proposed rule.

ONC: 21st Century Cures Act
U.S. Department of Health and Human Services' (HHS) Office of the National Coordinator for Health Information Technology (ONC) today released a Notice of Proposed Rulemaking (NPRM) for public comment on proposals to implement certain provisions of the 21st Century Cures Act (Cures Act) and make several enhancements to the ONC Health IT Certification Program (Certification Program) to advance interoperability, improve transparency, and support the access, exchange, and use of electronic health information. You can find out more about NPRM, and future proposed rules around this Act, here.

OMB/US Access Board/ GSA: IT Accessibility
The 2023 Consolidated Appropriations Act includes a section (752) that establishes requirements for federal agencies to assess and improve the accessibility of their electronic and information technology to individuals with disabilities. The U.S. Office of Management and Budget (OMB), U.S. Access Board, and General Services Administration’s (GSA) Government-wide IT Accessibility Program closely collaborated to provide updated criteria and instructions for federal agencies to report on the implementation of Section 508 of the Rehabilitation Act. Federal departments and agencies are required to develop, procure, maintain, and use information and communications technology (ICT) that are accessible to people with disabilities and to provide employees and members of the public with disabilities equitable access to information and data.
Congress requires federal agencies to report on the implementation of Section 508 in accordance with the updated criteria and instructions by August 11, 2023. The assessment criteria, including general information and the questions, are available now for planning and to facilitate reporting. Instructions for reporting, key dates, contact information, and other information are on the Section508.gov Government-wide Section 508 Assessment webpage
Federal agency Section 508 reports assist OMB, GSA, Access Board, and the Department of Justice in fulfilling statutory reporting requirements to evaluate agency implementation progress. GSA, in consultation with OMB, will issue a report to Congress, as well as a publicly available data file that contains all agency responses, by December 29, 2023.
Other CYSHCN Policy-Related Materials of Interest
Manatt Health: Webinar on Whole Child Care
Evidence suggests that investing in children’s social needs leads to long-term improvements in health, economic stability, and resilience, but policymaking prioritizes addressing the social determinants of health for adults. Manatt will facilitate a panel discussion with state and national leaders who are pioneering new ways to address the health-related social needs of children. Speakers will review the emerging opportunities for financing children’s interventions, including 1115 waivers, “in lieu of services” (ILOS), and Children’s Health and Wellness Funds.
Strategies for Providing Whole Child Care - A Blueprint for Meeting Children’s Social Needs 
May 2 12:30-1:30 pm PST/ 1:30-2:30 MST/ 2:30-3:30 CST/ 3:30-4:30 EST
NOTE: Related publication: Financing Approaches to Address Social Determinants of Health via Medicaid Managed Care: A 12-State Review – from the Center for Health Care Strategies

NHeLP: Medicaid Awareness Month
Each April, the National Health Law Program celebrates Medicaid in honor of Medicaid Awareness Month. NHeLP protects the rights of Medicaid beneficiaries, advocate for Medicaid policies and laws in Congress and statehouses from coast to coast and enforce Medicaid law in the courts in order to meet the needs of low-income individuals, families, and underserved communities.

Visit NHeLPs Medicaid Awareness website here.

NASHP: Behavioral Health & Managed Care
Performance measurement is a pillar of state Medicaid managed care quality improvement and oversight efforts, is often factored into plan payment, and supports public reporting.

In late 2022, NASHP scanned state Medicaid managed care programs to identify which behavioral health clinical and utilization performance measures they were using, as well as how they were using them in payment and public reporting. You can find a brief here and a state tracker here.

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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.