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Family Voices Washington Update
Washington, DC Update 6/2/23
Legislative Updates
Debt Ceiling
President Biden and House Speaker McCarthy reached agreement on the debt ceiling, and the Bi-Partisan Fiscal Responsibility Act passed the House. Default still looms large as the Senate must now pass this bill by June 5th.
You can find the text of the bill here and link to President Biden’s statement on the agreement here.

A few provisions of interest for CYSHCN and their families in the bill:
  • No changes to Medicaid
  • Rescind roughly $30 billion in unspent COVID-19 relief funds, but retain $5 billion in funding for the federal government’s initiative to expedite development of COVID-19 treatments and therapeutics
  • Tighten work requirements in the Supplemental Nutrition Assistance Program (SNAP) for able-bodied, low-income adults without dependents between the ages of 18-54
  • Loosen work requirements for veterans, homeless individuals, and people leaving foster care
  • Establish a new five-state pilot program to encourage greater work and better family outcomes in the Temporary Assistance for Needy Families (TANF) program
Unwinding of Medicaid Continuous Coverage and the PHE
ALERT - More Communication About Redetermination Process Needed ASAP
Last week, we sent an email to the network alerting you to the recent Kaiser Family Foundation article that lays out the fact that despite efforts to get the word out about the redetermination process, people do not know. Survey Finds Many Medicaid Enrollees Unprepared for Eligibility Renewal Process, and Some Believe They Could Struggle to Find Coverage or End Up Uninsured if They Lose Medicaid | KFF

CMS is emphasizing the need for basic messaging and the need to blitz through every possible method/route. Here is the toolkit that gives templates for simple messaging (like “check your mail”) in multiple languages. Unwinding Communications Resources | Medicaid 

This blog by Georgetown CCF echos this need and shares examples of efforts taken by various states, as well as links to tools.


NAMD: HCBS and end of the PHE
This resource from the National Association of Medicaid Directors is designed to help Medicaid agency leaders, as well as their colleagues in aging and disability agencies, prepare for the end of federal flexibilities that Medicaid adopted to support older adults and individuals with disabilities during the COVID-19 public health emergency. Since many AOs and F2Fs are involved in efforts to improve home health care, reading this might be useful to understand the guidance, thinking and discussions Medicaid directors are having around HCBS flexibilities that were extended during the PHE.


SHVS and Manatt: Unwinding Dashboard
For readers who find visuals helpful, this resource has flow charts and tables.
This State Health and Value Strategies product, created in partnership with Manatt Health, includes a timeline of key Medicaid unwinding provisions included in the Consolidated Appropriations Act, 2023.
From the Administration
HHS: Meaningful Access to Language Assistance Services
The U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) released a report summarizing the progress the Department has made on improving the provision of meaningful access to language assistance services to persons with limited English proficiency (LEP).

The report was issued in response to President Biden’s Executive Order 13985, Advancing Racial Equity and Support for Underserved Communities through the Federal Government, which seeks to increase access to government services to address barriers in federal programs and services. This is the first such report HHS has issued since 2016. The report is also in line with Executive Order 14012, Restoring Faith in Our Legal Immigration Systems and Strengthening Integration and Inclusion Efforts for New Americans, which directed the Federal Government to develop welcoming strategies to promote integration and inclusion and embrace the full participation of the newest Americans, many of whom come with LEP, in our democracy.

This first annual report summarizes the Department’s progress to date and charts a course to increase meaningful language access across the Department. It discusses the need for reducing barriers and increasing language access in the four key areas identified in the Equity Plan:
  • Internet access;
  • Telephone access;
  • Access to programs and activities; and
  • Federal funds to provide needed language services.

The report also maps specific benchmarks and progress to date, including OCR’s collection and analysis of 25 HHS agency and component-level Language Access Plans, and a review of work by the HHS Language Access Steering Committee to assess needed improvements and to share best practices. The report discusses how work will continue in 2023 and beyond, including:
  • The creation of a new HHS Language Access Coordinator position;
  • The setting up of a centralized language access center hub for HHS;
  • Updating and revising HHS’s 2013 Language Access Plan; and
  • Taking steps to address problems identified in OCR investigations of LEP complaints filed against HHS

Read the Report:


CMS: Medicaid and Schools


US Access Board: Public Comments
Medical diagnostic care is essential to everyone, including people with disabilities. Using diagnostic equipment often requires people to transfer, such as onto examination tables and chairs, for evaluation. Historically, medical diagnostic equipment (MDE) has been, and continues to be, inaccessible to many people who use wheelchairs, which can lead to misdiagnosis or barriers to basic care and examinations.
The U.S. Access Board has issued a notice of proposed rulemaking (NPRM) on standards for accessible MDE regarding one provision on the low transfer surface height for certain types of MDE used by patients in a supine, prone, side-lying, or seated position. You can learn more here.
Other CYSHCN Policy Related Materials
State Health and Value Strategies & Manatt: Proposed Rules Access and Managed Care
Recently, State Health and Value Strategies partnered with Manatt to host webinars and create a companion document discussing strategies for the proposed rules for Medicaid access and managed care.

You can find recordings of the webinar and the companion document here.

ICYMI: This fact sheet summarizes both of the proposed rules.

Manatt: Telehealth and Medicaid
This Manatt newsletter article discusses issues for states to consider as they think about whether and how to make aspects of telehealth permanent. Notably, while many policies stood up overnight during the pandemic, as the dust settles, Medicaid agencies are learning that the data about use, quality and cost are limited.

The article also includes a link to Manatt’s telehealth tracker, which offers an organized record of both federal and state telehealth policies created during the pandemic.


Surgeon General: Social Media and Youth
United States Surgeon General Dr. Vivek Murthy released a new Surgeon General’s Advisory on Social Media and Youth Mental Health. While social media may offer some benefits, there are many indicators that social media can also pose a risk of harm to the mental health and well-being of children and adolescents. Social media use by young people is nearly universal, with up to 95% of young people ages 13-17 reporting using a social media platform and more than one-third saying they use social media “almost constantly.”

While more research is needed to determine the full impact social media use has on nearly every teenager across the country, children and adolescents don’t have the luxury of waiting years until we know the full extent of social media’s effects. The Surgeon General’s Advisory offers recommendations stakeholders can take to help ensure children and their families have the information and tools necessary to make social media safer for children:
  • Policymakers can take steps to strengthen safety standards and limit access in ways that make social media safer for children of all ages, better protect children’s privacy, support digital and media literacy, and fund additional research.
  • Technology companies can better and more transparently assess the impact of their products on children, share data with independent researchers to increase our collective understanding of the impacts, make design and development decisions that prioritize safety and health – including protecting children’s privacy and better adhering to age minimums – and improve systems to provide effective and timely responses to complaints.
  • Parents and caregivers can make plans in their households such as establishing tech-free zones that better foster in-person relationships, teach kids about responsible online behavior and model that behavior, and report problematic content and activity.
  • Children and adolescents can adopt healthy practices like limiting time on platforms, blocking unwanted content, being careful about sharing personal information, and reaching out if they or a friend need help or see harassment or abuse on the platforms.
  • Researchers can further prioritize social media and youth mental health research that can support the establishment of standards and evaluation of best practices to support children’s health.

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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.