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Washington, DC Update 11/21/22
Legislative Updates
Both houses of Congress returned this week to kick off a busy "lame duck" session to close out the 117th Congress. The date to watch, other than the end of the year, is December 16th, when government funding is set to expire.

What is a lame duck session? This is the session of congress (right now until the end of 2022) that takes place right after an election for the next congress (118th Congress), but before the current Congress (117th Congress) reaches the end of its term.

Why does this matter? How does it affect Congress this year? For years there has been discussion about what a Congress should do after an election, where in some states a new member has been elected for the new Congress but the current member of Congress still must serve until the end of the year. While the Senate votes are now finalized, the House elections continue. It is not clear how the current members of Congress will work together for the remaining days, but there are important issues like the federal budget and a number of bipartisan priorities still to be passed.

Plain Language: Congress has a lot of work to do before the end of the year, but it is not clear how they will work together to get that work done.

Children’s health in the lame duck: There are many bills that have been introduced that members of Congress will work to get included in a possible end-of-the-year Omnibus spending package (Omnibus spending bill is a type of bill that packages many of the smaller ordinary appropriations bills into one larger single bill). Some of the bills are reauthorizations of current programs, while others try to advance new programs or deepen and expand investments in certain areas. With regard to children’s health, there are a number of “big” programs up for reauthorization:
  • The Temporary Assistance for Needy Families (TANF) program
  • The Maternal, Infant, and Early Childhood Home Visiting (MIECHV) programs
  • A number of mental health and substance use disorder programs

Child health policy groups continue to push for the passage of new programs like permanent CHIP, Medicaid Continuous Enrollment, and significant investment in children’s mental health.

F2F funding in the lame duck: Reauthorization for the F2F program expires in FY 2024 (grant cycle funded to May 2025). However, if the program would like to seek additional funds, then it must find champions in 2 ways:

  1. Appropriations: If you have a member of either house who is on the appropriations committee, work to establish a relationship. The appropriators have the power to give a one-time expansion to the program that can set the precedent for future increases, and
  2. Finance and Energy & Commerce: Work to establish relationships with any of your members on these committees. We need new champions not only for the next reauthorization but also to be able to seek expansion of the program.

Is it possible to get additional F2F funding in this lame duck session? Anything is possible. Contact Brooke Lehmann at Brooke@capitolworksllc.com if you want help to engage your member of Congress on any of these committees ASAP.
From the Administration
CMS: Data to Advance Health Equity
Check out this recent blog by the Center for Medicare and Medicaid Studies (CMS) Office of Minority Health about the role of data in advancing health equity. It gives background and more information and resources to support movement on “The Path Forward: Improving Data to Advance Health Equity Solutions”, which for the first time outlines a plan to tackle health equity data efforts across CMS programs. The intent is to achieve health equity by underlining the importance of health equity data collection and chart the next steps for CMS to improve data collection efforts and, in turn, advance health equity.

NOTE for F2Fs: The Path Forward report, as well as other materials linked in the blog, might be useful for F2Fs in 2 ways: 1) in conversations with your state Medicaid and Title V agencies about data, how to partner with families to develop equitable metrics (aka asking the right questions) and data collection, share data, and bring about health equity; and 2) the information may be helpful in developing your F2F Diversity and Inclusion plan.
Other Policy-Related Materials of Interest to CYSHCN
SVHS: Language and Communication Types for PHE
State Health & Value Strategies recently shared an article for states (which also includes links to other communication materials) reporting some qualitative consumer research by CMS about language to communicate the end of the public health emergency. The research included a combination of individual interviews as well as focus groups representing a mix of recent and longer-term enrollees from different racial and ethnic backgrounds. All had incomes between 100% and 200% of the federal poverty level and some had experienced recent changes in income and jobs. Some key takeaways include:

  • Low Awareness of “Public Health Emergency” – The phrase “public health emergency” is confusing to consumers. Only a handful had heard of the phrase, and many just assume it refers to the pandemic, eliciting various points of view. Most find references to the public health emergency to be confusing and scary. If you must reference something, you can refer to “continuous enrollment requirements” but in consumer-facing materials it’s best to simply acknowledge that rules will be changing and when, once the timeline is clear.

  • Terminology on “Renewals” – Enrollees use different terms when referring to the process they must go through to keep their Medicaid coverage. “Renewal” was the term used most often, and some called it “redetermination,” “recertification,” “re-apply,” or even “re-enroll.” Bottom line, there is no common terminology for this process, but the fact that some action must be taken is understood.

  • Using “Insurance” Instead of “Coverage” – It is recommended to use insurance as opposed to other terms such as health coverage when messaging to consumers.
  • Enrollees Prefer Multiple Communications Channels – Enrollees want to receive important information about Medicaid renewal through email and other means beyond just mailed notices. Many also want Medicaid to use multiple communication methods to notify them about renewal, including mail, text, digital app, phone, and email.

  • Knowledge Gaps on Coverage Options for Non-Medicaid Eligible – General awareness of the Marketplace exists and varies across states, but significant knowledge gaps remain about the availability of financial help to lower costs.

NOTE for F2Fs: While this information may be something you already know, it may be helpful to use this CMS data report (linked above for sharing) to support your work around types of communications and methods needed by CYSHCN and families about Medicaid and other health-related agencies.


ICYMI
Last week the US Supreme Court heard arguments in Health and Hospital Association of Marion County, Indiana v. Talevski. This update previously shared information about that case; however, this blog by Georgetown Center for Children and Families does a great job explaining the two issues presented, the law, and the possible impact of a decision in a very understandable way.


PCORI: Advisory Panel Openings
The Patient Centered Outcomes Research Initiative (PCORI) is currently seeking nominations for numerous advisory panels, including patient engagement, rare disease and clinical trials. Information on panels and how to apply available here.

NOTE about PCORI: The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit research organization that seeks to empower patients and others with actionable information about their health and healthcare choices. They fund comparative clinical effectiveness research (CER), which compares two or more medical treatments, services, or health practices to help patients and other stakeholders make better informed decisions.

PCORI’s unique place in the health research landscape stems from its unwavering focus on outcomes that matter to patients and it is widely acknowledged as a leader in driving US clinical research to become more patient-centered. PCORI is committed to ensuring that patients and other healthcare stakeholders have a seat at the table throughout the research process—helping to prioritize research topics, design and conduct the studies, and share the results.

Consider applying for an advisory role to be able to influence research policy today!

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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.