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Washington, DC Update 5/11/23
Legislative Updates
Debt Ceiling
Last week, Treasury Secretary Yellen told Congress that the debt ceiling must be raised by June 1st, or the federal government will run out of money to pay its existing debts. Defaulting on the national debt could have major consequences for the economy. House Republicans have stated that they will not vote to raise the debt ceiling without making significant cuts to discretionary programs as put forth in the Limit, Save, Grow Act (H.R. 2811). The bill included work requirements for people receiving Medicaid and Supplemental Nutrition Assistance Program (SNAP). President Biden will meet with leaders from both the Senate and House this week to seek agreement.

If you want to read more about the proposed budget, consider these resources:
  • You can find the Congressional Budget Office (CBO) estimates on Medicaid work requirements proposed in the Limit, Save, Grow bill here.
  • This NHeLP blog tells how Medicaid work requirements would affect people with disabilities.
  • A new KFF analysis finds that an estimated 1.7 million Medicaid enrollees could become ineligible for federal Medicaid under proposed work requirements and presents state-by-state projections, based on estimates of coverage loss from the Congressional Budget Office (CBO).
  • Polling and Message Testing materials conducted by Hart Research
  • Coalition on Human Needs FY24 Budget Library

Words Matter Act
Last week, a bipartisan House group introduced a bill to strike more than two dozen instances of outdated and derogatory terminology describing intellectual disability from federal law. The bill would insert the phrase “intellectual disability” to replace nearly 30 instances in statute where “mentally retarded” is currently used.

The bill, introduced by Reps. Mark Pocan (D-Wis.), Pete Sessions (R-Texas) and Cathy McMorris Rodgers (R-Wash.) and D.C. Del. Eleanor Holmes Norton (D), is identical to one introduced last year by the same group. You can read the text of the bill here and Rep. McMorris-Rodgers oppress release here.
Unwinding of the Public Health Emergency & Medicaid Continuous Coverage
The PHE ends today, May 11th
NHeLP Medicaid Unwinding tip of the Day
During Medicai renewal, states must continue to provide COVID19 treatment/therapies with no cost-sharing to Medicaid and CHIP enrollees - including vaccines, testing, treatment, equipment, and (sometimes) treatment for conditions that may seriously complicate COVID-19.

Kaiser Family Foundation: Post-PHE Full Costs of COVID-19 testing
After the public health emergency ends, private health plans will no longer be required to cover the full cost of COVID-19 tests ordered or administered by a clinician or to reimburse consumers for at-home rapid tests.
To estimate what consumers might have to pay for tests, KFF’s new analysis draws on claims data showing what private insurers have paid for different types of COVID-19 tests, as well as hospitals’ published “self-pay” prices for patients without insurance and a survey of major retailers’ prices for at-home COVID-19 tests. What consumers pay will depend on their insurance plan or whether they have insurance at all.

For example, the analysis finds the median price of a COVID-19 test in an outpatient clinical setting was $45 among people with large employer-based health coverage in 2021, though prices varied widely. Generally, antigen testing was cheaper than PCR testing, with a median price of $42 for antigen testing compared to $62 for PCR testing. In addition to the cost of the COVID-19 test itself, there may be an additional charge for the associated office visit depending on cost sharing arrangements, which can average about $90 for people with private health insurance.
CMS: Key Messages About the Renewal Process
CMS suggests that messaging should focus on encouraging people to get ready to renew their Medicaid and CHIP coverage. Messaging should be simple, direct, and informative, such as:
  • Update your contact information. Make sure [Name of State Medicaid or CHIP program] has your current mailing address, phone number, email, or other contact information. This way, they’ll be able to contact you about your Medicaid or CHIP coverage.
  • Check your mail. [Name of State Medicaid or CHIP program] will mail you a letter about your Medicaid or CHIP coverage. This letter will also let you know if you need to complete a renewal form to see if you still qualify for Medicaid or CHIP. 
  • Complete your renewal form (if you get one). Fill out the form and return it to [Name of State Medicaid or CHIP program] right away to help avoid a gap in your Medicaid or CHIP coverage.

Other health care options for families (or family members) that no longer qualify for Medicaid or CHIP
Individuals or families who no longer qualify for Medicaid or CHIP coverage might be able to buy a health plan through the Health Insurance Marketplaces, including HealthCare.gov. Marketplace plans are affordable, comprehensive, and convenient.
CMS tools and resources to accompany these messaging suggestions:
  • Unwinding Toolkit: CMS developed an Unwinding Toolkit that contains important information for families with Medicaid or CHIP, including steps they need to take to renew their coverage or find other health care options. Materials (available in English, Spanish, Chinese, Hindi, Korean, Tagalog, and Vietnamese) include social media posts, sample communications copy, email templates, a drop-in article, and more. 
  • Medicaid Unwinding Toolkit Supporting Materials: These include additional unwinding materials, like post cards, flyers, and tear pads.
  • Medicaid.gov: Visit Medicaid.gov/renewals for more information, including the State Medicaid/CHIP Map, which has contact information for specific state Medicaid and CHIP programs. There’s also contact information for the Marketplace Call Center.
  • Unwinding Tip Sheet: If someone loses their Medicaid or CHIP coverage, this resource explains three things you can do to help.

State Health and Value Strategies (SHVS): Unwinding Updates
This Expert Perspective installment by SHVS shares links to state-specific and other updates around a variety of aspects of unwinding. You can scroll through to see information about your state (with links) or other messaging information that might be helpful.

Kaiser Family Foundation (KFF): NEW Unwinding Tracker
Now that pandemic-era protections have expired, states will disenroll millions of people from Medicaid over the next 12 months; the exact number will depend in part on state policies and administrative infrastructures. To keep up with the changes, KFF’s new Medicaid Enrollment and Unwinding Tracker provides the latest state-level Medicaid/CHIP enrollment data for all 50 states and the District of Columbia, as well as any unwinding data on monthly renewals, disenrollments, and other measures that may be available for states. 
The tracker also provides information on state-specific Medicaid renewal policies, eligibility policies, and system capacity measures. The tool includes national data on Medicaid enrollment as reported by the Centers for Medicaid and Medicare Services (CMS); however, these data lag by several months and do not provide a current picture of net changes in Medicaid enrollment.
Five states began Medicaid disenrollments in April, and 14 states began in May. The remaining states (31) will start the process in June or later. Arizona – one of the first states to begin disenrollments – is the only one so far to report a decrease in monthly Medicaid/CHIP enrollment since March 2023. More state-level Medicaid enrollment data will become available this summer.

Georgetown Center in Health Insurance Reform blog on Unwinding
From the Administration
ACF: Expansion of Diaper Distribution Program
U.S. Department of Health and Human Services (HHS), through the Administration of Children and Families (ACF), announced an additional $8.2 million to support the first-ever federally funded diaper distribution program for low-income families. Initially launched in September 2022, the Diaper Distribution Demonstration and Research Pilot (Diaper Distribution Pilot) will add an additional six states and one tribe to the original grant recipients to address widespread diaper needs. The seven new grants will serve families in Alabama, California, Maryland, Massachusetts, Ohio, Utah, and the Sisseton-Wahpeton Oyate of the Lake Traverse Reservation. Follow this link for more information and videos about the program in English, Spanish and Mandarin.

ACL: Funding to Support Family Caregivers
ACL is excited to announce $20 million in new funding for our first major initiative in support of the 2022 National Strategy to Support Family Caregivers. ACL will award five cooperative agreements for projects to foster advancements in two programs authorized by the Older Americans Act — the National Family Caregiver Support Program and the Native American Caregiver Support program.
Each project will receive up to $1.1 million annually for four years to develop, test, and disseminate new approaches to supporting family caregivers. Using the caregiver strategy as a roadmap, and with technical assistance from ACL, each project will focus on one of the five priority areas of the strategy:
  1. Improved awareness of and outreach to family caregivers.
  2. Inclusion of family caregivers in the care team.
  3. Services and supports for family caregivers.
  4. Financial and employment protections.
  5. Data, research, and best practices.

This initiative creates an unprecedented opportunity for the aging and disability networks to build new partnerships with organizations in other fields that can help drive innovation in these areas. A wide range of public and private organizations are eligible and encouraged to apply, so please share this announcement broadly.
Awardees will be expected to collaborate with ACL on all activities and to align their work with the strategy and its companion document, First Principles: Cross-Cutting Considerations for Family Caregiver Support. 
The initiative is in keeping with President Biden’s Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, signed April 18. This executive order directs federal agencies to take more than 50 actions making affordable, quality childcare more available to working families; expanding access to home and community-based services; growing and strengthening the direct care workforce; supporting family caregivers; and more — giving us a unique opportunity to transform our long-term care systems and mitigate the challenges that family caregivers face.
Complete details and application instructions are posted on Grants.gov. Applications are due Monday, June 26, 2023.

HHS: Two New Mental Health Initiatives
The two initiatives – FindSupport.gov and the HHS Children and Youth Resilience Challenge – will increase access to health resources and support for those working to address mental health challenges.

The HHS Children and Youth Resilience Challenge will provide $1 million in funding for innovative community-led solutions to promote resilience in children and adolescents affected by the COVID-19 pandemic and other disasters, and promote positive strategies to help children and adolescents thrive. The Resilience Challenge, which was developed by the HHS Behavioral Health Coordinating Council Subcommittee on Children and Youth, is recognized as part of the President’s Unity Agenda and Mental Health Strategy and advances HHS’ Roadmap for Behavioral Health Integration - PDF.

The launch of FindSupport.gov will help Americans identify available resources, explore information about various treatment options, and learn how to reach out to get the support they need for issues related to mental health, drugs or alcohol. The website provides information on how to find treatment and support based on insurance status, including Medicaid, Medicare, U.S. Department of Veterans Affairs health care, TRICARE, private insurance, and no insurance. It also features resources on how to set up an appointment so that when people meet with a health care professional, they can feel confident that they are taking the right steps.

Related article by Kaiser Family Foundation of interest to CYSHCN

HHS: Surgeon General Advisory - Epidemic of Loneliness and Isolation
The Surgeon General’s Advisory on Our Epidemic of Loneliness and Isolation - PDF lays out a framework for a National Strategy to Advance Social Connection, which has never been implemented before in the United States. It details recommendations that individuals, governments, workplaces, health systems, and community organizations can take to increase connection in their lives, communities, and across the country and improve their health.

“Our epidemic of loneliness and isolation has been an underappreciated public health crisis that has harmed individual and societal health. Our relationships are a source of healing and well-being hiding in plain sight – one that can help us live healthier, more fulfilled, and more productive lives,” said U.S. Surgeon General Dr. Vivek Murthy. “Given the significant health consequences of loneliness and isolation, we must prioritize building social connection the same way we have prioritized other critical public health issues such as tobacco, obesity, and substance use disorders. Together, we can build a country that’s healthier, more resilient, less lonely, and more connected.”

This related blog by SHVS offers some great insights and strategies about communicating health enrollment coverage options to non-citizen communities. It discusses misinformation and misunderstanding, as well as tips for key messaging points.
ACL: Webinar - HCBS Settings rule
"Strengthening Advocacy in the Home and Community-Based Services (HCBS) Settings Rule" series, "Getting the Services You Need from the Waiver – Participant Rights," on Wednesday, May 17, 2023, from 2:00-3:30 PM ET. Register here.

The webinar will review Appendix F – Participant Rights in the HCBS waiver application and the safeguards this appendix provides for participants. The presentation will cover the part of the waiver application where the state outlines its required fair hearing process and whether it will include a dispute resolution process and a grievance system. The webinar will also cover how stakeholders can have an impact on the application and why these protections are important.
Other CYSHCN Policy Related Materials
NHeLP: Collection of Demographic information
NHeLP submitted comments in support of OMB’s proposal to revise the standards that the federal government uses to collect demographic information on race, ethnicity, and tribal affiliation. The revision would improve visibility for a broader range of populations, including multidimensional and intersectional communities. OMB must adequately support implementation of the proposed revisions with resources, public education, and guidance to ensure the successful adoption of the new standards. You can read NHeLPs comments here.

SHVS/Manatt Webinar and Materials: Medicaid Access and MCO Proposed Rules
On April 27, 2023, CMS released two highly anticipated proposed rules: (1) “Managed Care Access, Finance, and Quality” (or the “Managed Care Proposed Rule”), which focuses on managed care delivery systems; and (2) “Ensuring Access to Medicaid Services” (or the “Access Proposed Rule”), which focuses on fee-for-service delivery systems and program improvements for home and community-based services across delivery systems. Together, these rules would reshape the federal regulatory landscape for Medicaid and CHIP, particularly with respect to standards for ensuring access to care, transparency and oversight of provider payment rates, engagement of people enrolled in Medicaid, quality measurement, and program accountability.

SHVS published a new expert perspective authored by Manatt Health to accompany their upcoming two-part webinar series, that summarizes the two proposed rules, CMS Proposes Significant Medicaid Policy Changes for Access Monitoring, Managed Care, and HCBS.

During the first webinar, experts from Manatt Health will provide an overview of the access to care and access monitoring proposals included in both rules.

The second webinar will focus exclusively on key provisions in the “Managed Care” proposed rule related to coverage, financing, payment, and quality. Presenters will highlight areas where CMS is requesting comment (due July 3, 2023) and review considerations for state officials. Participants will also have an opportunity to pose their questions to the experts on the panel.

To request accommodations for this event due to a disability, please contact Stephanie Benjamin ([email protected]) at least 48 hours in advance.

CMS Proposed Rules Part 1: Access to Care and Transparency
Tuesday, May 23, 2023, 1:00 to 2:00 p.m. ET

CMS Proposed Rules Part 2: Coverage, Financing, Payment and Quality
Friday, May 26, 2023, 2:00 to 3:00 p.m. ET

ICDR: The State of Disability Statistics
The State of the Science Conference on Disability Statistics was conducted by the Interagency Committee on Disability Research (ICDR) on February 9 and 10, 2023 to convene federal, state, academic, and other partners to discuss the state of the science in disability statistics. The goals of the conference were to:
  1. Discuss the current state of pressing topics in disability statistics including research on disability using linked datasets, disability as a demographic variable, and identifying people with intellectual and developmental disabilities in national data;
  2. Establish collaborative relationships across stakeholder groups; and
  3. Discuss future directions in disability statistics.
The ICDR has published a document with several key highlights from the conference, in addition to a full summary report of the meeting. The meeting recording is also now available for viewing. You can find these materials on the ICDR website at the following link: https://icdr.acl.gov/resources/reports/2023-icdr-state-science-conference-disability-statistics. The “Key Findings” section is easy to skim and may have some information about the types of measurement tools and datasets used that provides helpful background. There are lots of other links and studies on this website that are also interesting.

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.