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Washington, DC Update 5/4/23
Legislative Updates
Debt Ceiling
Although the House did pass the Limit, Save, Grow Act last week, it will not pass in the Senate. How quickly members of Congress move to come up with a bi-partisan agreement depends on the date by which Treasury Secretary Yellen indicates that the debt ceiling must be raised. The Secretary is expected to weigh in later this week.


Georgetown Center on Health Insurance Reforms
The U.S. House of Representatives’ Education & Workforce Committee is considering several bills affecting the affordability and accessibility of employer-sponsored insurance. CHIR’s Sabrina Corlette testified on these proposals and the state of private insurance in general.
Unwinding of the Public Health Emergency & Medicaid Continuous Coverage
ALERT! Scams to Charge for Medicaid Re-Enrollment
As state agencies process #MedicaidRenewals for 92 million beneficiaries, scammers are charging bogus fees to "re-enroll" people. Advocates need to be on the lookout for scams and share accurate information. There is never a fee to submit Medicaid applications or renewals.



CMS: Unwinding and Coverage for COVID 19 Tests
The ending of the Public Health Emergency may impact an individual’s coverage of COVID-19 tests. We encourage you to know these changes and share the New Consumer Fact Sheet on COVID-19 tests.

What to share with CYSHCN and families:
Before May 11, 2023
  • If you have any type of health insurance, you can get up to eight over-the-counter tests per month with no out-of-pocket costs. Over-the-counter tests are available in most pharmacies and may also be available online for delivery.

After May 11, 2023
  • Laboratory tests for COVID-19 that are ordered by your provider will still be covered with no out-of-pocket costs for people with Medicare. Over-the-counter tests will still be available, but there may be out-of-pocket costs. Coverage of over-the-counter tests may vary by your insurance type, as described below.


Georgetown CCF Unwinding Resource page
A variety of resources, including template communications materials and toolkits, are available here.


HCBS Unwinding
As the Public Health Emergency draws to a close on May 11, 2023, NAMD, Advancing States, and the National Association of State Directors of Developmental Disabilities (NASDDDs) issued a new resource to help state agency leaders unwind pandemic-era flexibilities in Medicaid home- and community-based services.


Georgetown CCF BLOG: Continuous Coverage
This blog suggests how new CMS approvals in Oregon and Washington will protect health coverage for more children and families during this year’s consequential unwinding, minimizing coverage disruptions and easing transitions to new sources of health coverage.


Kaiser Family Foundation (KFF): New Estimates as to Medicaid Coverage Loss
This KFF article estimates coverage loss under 3 possible rates of Medicaid coverage loss during the unwinding of Medicaid continuous coverage.
From the Administration
White House Briefing
On May 5th, join the Office of Public Engagement, White House Domestic Policy Council, and Centers for Medicare & Medicaid Services for a webinar about the Executive Order Increasing Access to High-Quality Care and Supporting Caregivers and Notices of Proposed Rulemaking Ensuring Access to Medicaid Services and Medicaid Managed Care State Directed Payments and In Lieu of Services:
ICYMI: Executive Actions to Support Caregiving


NEW CMS: Notice of Proposed Rulemaking (NPRM) on Access
Last week CMS released two proposed rules, Ensuring Access to Medicaid Services (Access NPRM) and Managed Care Access, Finance, and Quality (Managed Care NPRM), that lay out historic advancements in access to care, quality of care, and improved health outcomes for Medicaid beneficiaries across fee-for-service (FFS) and managed care delivery systems, including home and community-based services (HCBS) provided through those delivery systems, and for CHIP beneficiaries.

Both NPRMs can be downloaded from the Federal Register here. Public comment period ends July 3, 2023.

Overview of both NPRMS:

**The summary above and blogs below are the best reads if you do not have much time but want to understand what is being proposed. The rules take great steps forward in improving transparency, such as requiring publication of rates and other critical information on public websites, and improving monitoring and quality.

Summary of Children’s Medicaid and CHIP provisions in both NPRMs:

Summary of HCBS related provisions in the Access NPRM:

Summary of Children’s Medicaid/CHIP provisions in Managed Care NPRM:

Blogs on Access and Managed Care NPRMs:


ACL: New Award to Advance Disability Employment
The Rehabilitation Services Administration (RSA) within the Department of Education announced a new funding opportunity with an exciting provision. The Pathways to Partnerships Innovative Model Demonstration Project, RSA’s largest discretionary grant, focuses on building partnerships between the systems that support disabled youth as they transition from school to adult life to increase their opportunities for competitive integrated employment.
For the first time ever, grantees must partner with federally-funded centers for independent living (CILs) to receive funding through this program.

Applications are due June 5, 2023.

In the ACL blog and this video, leaders from RSA’s Office of Special Education and Rehabilitative Services and ACL’s Administration on Disabilities share information about the grant, including how ACL and RSA are working together to improve collaboration and coordination between our programs.


ICYMI CMS: NPRM for DACA Recipients
Last week the Department of Health and Human Services (HHS), through the Centers for Medicare & Medicaid Services (CMS), released a notice of proposed rulemaking (NPRM) that, if finalized, would expand access to health care by reducing barriers for Deferred Action for Childhood Arrivals (DACA) recipients.

The proposed rule would amend the definition of “lawfully present” to include DACA recipients for the purposes of Medicaid and CHIP. In effect, this would extend Medicaid and CHIP coverage to children and pregnant women in states that have elected the “CHIPRA 214” option for children and/or pregnant individuals, the Basic Health Program, and Affordable Care Act Marketplace coverage. DACA recipients would need to meet all other eligibility requirements to qualify for coverage. Additionally, DACA recipients would be eligible for financial assistance through the Marketplace, such as advance payments of the premium tax credit and cost-sharing reductions, if they meet all other eligibility requirements.

Other CYSHCN Policy Related Materials
Advancing States Report: Advancing Equity through MLTSS Programs
This report highlights the numerous ways that managed long-term services and supports (MLTSS) programs can enhance state capacity to create more equitable programs for consumers. Research and interviews identified five key themes, which are explored in detail with recommendations for future action. Read the report.


Society of Actuaries: Informal Caregiving: Measuring the Cost and Reducing the Burden
The Society of Actuaries Research Institute looks anew at previously published data on the number of hours of care provided by family caregivers and estimates "...the total annual cost of informal caregiving somewhere between $530 billion (NASEM) and $1.14 trillion (AARP). This is a wide range, but even at the lower end of the range, the values are substantial." The report analyzes the need for informal caregiving and its impacts on employees, employers, and other stakeholders. The research goal is to educate stakeholders, policymakers, and others about informal caregiving, and how associated challenges might be addressed.

Thank you for subscribing to the Washington, DC Update newsletter. Please feel free to contact the Family Voices Public Policy and Advocacy consultant, 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.