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Family Voices Washington Update

Washington, DC Update 11/15/23

Legislative Update

The November 17th deadline to pass a federal budget is this Friday, and there is no agreement (on either a budget bill or a temporary, continuing resolution) needed to prevent a government shutdown. The new speaker of the House, Representative Johnson (R-LA), has suggested a tiered approach to a continuing resolution. If approved, his plan puts forth a temporary bill (continuing resolution) funding the government in a “laddered” approach in which some government programs will run out of funding on January 19 and others will run out on February 2. Specifically, funding for Agriculture-FDA, Military Construction-VA, and Energy-Water Development would run through January 19, 2024, and everything else would be funded through February 2 of next year. Funding levels would remain at the current fiscal year (FY) 2023 levels. This plan appears to be gaining support. 

Unwinding of Medicaid Continuous Coverage and the PHE

CCF: Unwinding and Enrollment Tracker

The Georgetown Center for Children and Families (CCF) posts its unwinding data, which is updated frequently. Below is an explanation of each CCF unwinding data tracker and how the data is calculated, collected and analyzed.


Impact of Unwinding on Medicaid Enrollment

Called “What is the impact of unwinding on Medicaid enrollment?,” the primary Medicaid unwinding enrollment tracker shows national and state-by-state overall Medicaid enrollment and Medicaid child enrollment by month, with the first month being when unwinding terminations in the state began.


This tracker uses the most recent monthly data available, which will vary by state. In 31 states, the data source is state administrative data, and in 20 states (including the District of Columbia) for which state administrative data is not available, the data source is preliminary monthly enrollment data reported by the Centers for Medicare and Medicaid Services (CMS). The data sources used for each state are listed here.


In addition, this tracker includes an interactive state-by-state “heat” map showing the number and percentage decline in overall net Medicaid enrollment and in net Medicaid child enrollment in the most recent month for which data is available, relative to the first month of unwinding terminations. Note that net declines in enrollment are driven by several factors that move in different directions. This includes, for example, unwinding disenrollments partially offset by enrollment increases due to new applications and reinstatements/reenrollments of those previously terminated from Medicaid coverage.


All data used in this tracker are available in this downloadable spreadsheet.


Impact of Unwinding on Net Medicaid Child Enrollment

Called “How many children are losing Medicaid?,” the net Medicaid child enrollment tracker shows the national aggregate decline in net Medicaid enrollment among children since unwinding began. The data is the same used for the primary Medicaid unwinding enrollment tracker.


Medicaid Renewal Outcomes by State

Called “What is happening with Medicaid renewals in each state?,” the renewal outcome tracker includes an interactive state-specific chart of unwinding renewal outcomes. The tracker includes:

  1. Outcomes for ex parte renewal, renewal based on renewal form, determination of ineligibility or procedural disenrollment — for all renewals due
  2. Outcomes only for renewals that have been completed (i.e., excluding pending renewals)
  3. Disenrollment outcomes — a determination of ineligibility or procedural disenrollment — as a share of total disenrollments.


This tracker uses the monthly Medicaid renewal outcome data that states are required to report to CMS. However, 25 states publicly post the data they report to CMS or otherwise make it available before CMS releases its renewal outcome data for all states each month. In that case, the tracker uses the most recent data available from states, rather than relying on the CMS monthly release. In the situation where there are discrepancies between what states post and what CMS includes in its monthly release of reported data, the tracker uses the CMS-reported data. Links to the data used in this tracker are available in this downloadable spreadsheet.


Other State Unwinding Information and Data

Finally, CCF continues to collect additional information related to unwinding. The “Medicaid Unwinding, Federal Reporting, Strategies/Policies and Data by State,” page and accompanying detailed spreadsheet include detailed information and links related to state unwinding policies, documents, and information.


KFF: Medicaid Directors Survey Results and Reports on Spending and Programs Amid Unwinding

The Kaiser Family Foundation (KFF) released two new reports this week that look in depth and spending and programs:



These reports build off the 23rd annual budget survey of state Medicaid officials was conducted by KFF and Health Management Associates (HMA), in collaboration with the National Association of Medicaid Directors (NAMD). This year, 48 states (including the District of Columbia) responded to the survey, although response rates for specific questions varied. States completed the survey in the summer of 2023.


Here are a few key takeaways:

  • States expect national Medicaid enrollment will decline by 8.6% in state fiscal year (FY) 2024 as state Medicaid agencies continue to unwind pandemic-related continuous enrollment protections. After reaching record high enrollment, these estimates reflect a dramatic year-over-year decline in program enrollment from that high.
  • Driven by anticipated changes in enrollment, total Medicaid spending growth (federal and state spending combined) is expected to slow in FY 2024 to 3.4%; however, the state (non-federal) share of Medicaid spending is expected to increase by 17.2% in FY 2024 primarily due to the phase out of enhanced federal Medicaid matching funds (set to expire December 31, 2023.) State spending on Medicaid declined in FY 2020 and FY 2021 due to the pandemic-era enhanced FMAP.
  • States reported more rate increases for nursing facilities and home and community-based services (HCBS) providers than for other provider categories, with several states reporting substantial increases – likely in response to ongoing workforce or staffing-related challenges. The majority of states were also implementing rate increases for behavioral health (mental health and substance use disorder) providers and primary care providers. 
  • Mental health and/or substance use disorder (SUD) services continue to be the most frequently reported category of benefit expansions. States dramatically expanded the use of telehealth during the pandemic, and while telehealth coverage policies have now largely stabilized, states continued to report telehealth coverage expansions in FY 2023 and FY 2024.


KFF: Focus Groups Medicaid Renewal Process

New KFF focus groups look beneath the numbers at the experiences of enrollees who have gone through the Medicaid renewal process. Drawing from five focus groups with adults in Arizona, Florida and Pennsylvania who had their coverage renewed or who were disenrolled, the focus groups probed enrollees’ experiences with Medicaid, awareness of the end of the continuous enrollment provision, experiences renewing their coverage in recent months, and—if they were disenrolled—their efforts to regain Medicaid or transition to other coverage. Insights from focus group participants highlight both where processes are working well and where policies and systems create administrative barriers to maintaining Medicaid coverage for those who remain eligible.

Among the key takeaways: 

  • Most participants who successfully renewed their Medicaid coverage found the process quick and easy, especially when done online. However, some participants reported barriers to completing or submitting paperwork and faced long processing times. Some also experienced problems with understanding notices and other communications from the states, as well as challenges getting through to call centers.
  • Participants who were disenrolled lost their coverage for a variety of reasons, and some did not know why they had been disenrolled. Several said they did not receive any notices from the state and did not realize they had lost their coverage until they went to fill a prescription.
  • Participants said Medicaid enables them to access health care services, mental health services, and medications for themselves and their children with limited out-of-pocket costs and often keeps them healthy enough to work. Awareness that Medicaid coverage had been protected during the pandemic and that disenrollments had begun again in their state varied among participants. 
  • Many participants said that losing Medicaid would be harmful due to loss of access to needed prescriptions and treatments. They believed that losing Medicaid would cause a serious decline in their physical and mental health and expressed anxiety at the thought of no longer having Medicaid coverage for themselves or their children.


As unwinding continues, these enrollee experiences can help inform policymakers about opportunities to improve communication and outreach, simplify notices, provide assistance with renewals including through call centers, and help enrollees who were disenrolled regain Medicaid if eligible or transition to other coverage if no longer eligible.



Over six months after the expiration of pandemic-era enrollment protections, at least 27 million Medicaid enrollees—or roughly one-in-three enrollees across the country—have completed their state’s eligibility renewal process for the program. Over 18 million people have had their coverage renewed, and over 10 million have been disenrolled, as of November 8, 2023.

From the Administration

HHS: Open Enrollment Began November 1

Beginning November 1, Americans who are uninsured can purchase health insurance through the Affordable Care Act (ACA) marketplace. Follow this link to healthcare.gov to find local help, look at plan options and prices, and enroll.


Kaiser Health News article about open enrollment: Start Shopping: Enrollment Begins Nov. 1 for Most Obamacare Insurance Plans - KFF Health News


CMS: Transportation Guide

CMS recently released a Medicaid Transportation Coverage Guide, which highlights existing policies and includes new policies to address issues such as extended wait times and long-distance trips. It also addresses coverage of transportation for non-Medicaid eligible parents, family members, or other caregivers when required to participate in a Medicaid eligible child’s care.


Medicaid transportation is a critical service that assists beneficiaries with accessing covered Medicaid services and has a direct impact on health outcomes. This guide will help states understand the federal requirements for this service and flexibilities they can implement.


CBO: Effects of Medicaid Spending on Children

This paper examines the short- and long-term fiscal effects of Medicaid spending on children. In the short run, costs for Medicaid are paid upfront when the children (or their mothers) receive health care. In the long run, Medicaid enrollment during childhood has been shown to increase earnings in adulthood. Those higher earnings imply greater tax revenues and lower transfer payments by the federal government in the future. On a present-value basis, the Congressional Budget Office estimates that long-term fiscal effects of Medicaid spending on children could offset half or more of the program’s initial outlays, depending on sets of reasonable parameter values. That estimate is sensitive to the discount factor used to convert future effects to current dollars because long-term returns take over 70 years to fully materialize. The results are also sensitive to the predicted effect of Medicaid enrollment during childhood on earnings in adulthood (a parameter not known with precision) and to whether the changes in federal Medicaid spending come from noninvestment spending or from changes in federal borrowing.


Census Bureau: Changes to American Community Survey and Puerto Rico Community Survey

The Census Bureau is seeking input on proposed changes to the American Community Survey (ACS) and Puerto Rico Community Survey (PRCS) beginning in 2025. The ACS and PRCS are annual surveys conducted by the Census Bureau to provide current data on population changes happening around the country. These changes cover several topics, including disability.


The changes proposed are intended to reflect advances in how we think about disability, including using graded response categories (ie: “no difficulty with…”, “some difficulty with…”, “a lot of difficulty with…” etc.) instead of just “yes” or “no” questions. Additionally, a new question will ask about difficulty communicating.


Comments can be submitted online or to [email protected] until December 19, 2023.

Other CYSHCN Policy-Related Materials

Kaiser Health News: Quick Genetic Test Offers Hope for Sick, Undiagnosed Kids. But Few Insurers Offer to Pay.


A new, rapid genetic test shows promise in increasing diagnoses and improving treatment for some children with rare genetic conditions. Many insurers won’t cover it, but Florida's Medicaid program is among those that see benefits — and, potentially, savings.


Spanish version: Pruebas genéticas rápidas a bebés pueden salvar vidas, pero muchas aseguradoras no las cubren

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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.



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