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Family Voices Washington Update

Washington, DC Update 11/28/23

Legislative Update

Congress is back in session this week and will look to work on some pending policy priorities before the end of the year.

Budget: On November 16th, President Biden signed the continuing resolution (CR) (H.R. 6363) avoiding a government shutdown for a second time. A CR continues last year’s funding at the prior levels while Congress works to complete the process for funding the federal government for Fiscal Year 2024. The CR contains two different dates for when it expires. It expires for agencies covered by the Agriculture, Energy-Water, Military Construction-VA and Transportation-HUD bills on January 19th, and expires for the other eight bills, including the Labor-Health-Human Services- Education- Related Agencies (LHHS) bill (H.R. 5894) on February 2nd.

ABC Act: On October 24th, Senator Markey (D-MA), Senator Capito (R-WV), Representative Kim (D-NJ-3), and Representative Burchett (R-TN-2) introduced the Alleviating Barriers for Caregivers (ABC) Act (S. 3109 / H.R. 3060). The bills will require the Centers for Medicare and Medicaid Services (CMS), Children’s Health Insurance Program (CHIP) and the Social Security Administration (SSA) “to review their eligibility, processes, procedures, forms, and communications to reduce the administrative burden on family caregivers.” The bills would also annually require CMS, SSA and CHIP to report to Congress about any issues they are facing and any next steps they are taking to support family caregivers.

Unwinding of Medicaid Continuous Coverage and the PHE

On this CMS landing page, you can find links to:

  •  Help those who have lost coverage
  •  Unwinding resources and messages for kids and families
  • Materials and resources for rural communities, Hispanics/Latinos, disability community, Black Americans, American Indian and Alaska Natives, Asian American, Native Hawaiian, and Pacific Islanders
From the Administration

White House: Coordination of SDOH

The Biden administration issued a suite of resources that seek to help federal, state, and local governments better coordinate on social determinants of health (SDOH).

These resources include:

  1. The U.S. Playbook to Address Social Determinants of Health created by the Domestic Policy Council. Pillar 3 of the Playbook involves investing in backbone organizations like family-led F2Fs and FVAOs.
  2. A Health and Human Services Call to Action to Address Health Related Social Needs
  3. Coverage of Medicaid and CHIP Health-Related Social Needs Framework. This document lists tables of health-related social needs services and supports considered allowable under specific Medicaid and Children’s Health Insurance Program (CHIP) authorities and provides a discussion of the relevant considerations for each authority. The allowable HRSN services and supports enumerated here are based on robust evidence of strengthening coverage and improving downstream health outcomes, cost, and/or equity. States have flexibility to propose clinically focused, needs-based criteria to define the medically appropriate population, subject to CMS approval.


HHS: Language Access Plan

On November 15, 2023, the U.S. Department of Health and Human Services (HHS) joined 35 agencies across the federal government in prioritizing communication in services to the public by issuing a language access plan. This action is in furtherance of President Biden’s Executive Order 13166, which aims to improve access to services for people with LEP across the Administration.

HHS’s plan goes beyond solely addressing language access to individuals with limited English proficiency by recognizing the effective communication and accessibility requirements of Sections 504 and 508 of the Rehabilitation Act of 1973 to increase inclusivity of communication for persons with disabilities. Section 504 prohibits discrimination against otherwise qualified individuals on the basis of disability in programs and activities receiving financial assistance from HHS, while Section 508 requires federal agencies to ensure that their information and communication technology, including websites, electronic documents, and software applications, are accessible to individuals with disabilities.

The updated Language Access Plan sets forth practical guidance, best practices, and action steps in order for HHS Operating and Staff Divisions to develop their own, agency-specific language access plans. The plan also calls for agencies to collect data regarding their language access services in order to increase access to their respective programs, activities, and services for persons with limited English proficiency.

The HHS Language Access Plan is the product of the Department-wide Steering Committee which is run by its Office for Civil Rights. Every part of HHS is represented on the Steering Committee. HHS relaunched the Language Access Steering Committee last year to bolster language access across the Department. 

The updated Language Access Plan is found at: https://www.hhs.gov/sites/default/files/language-access-plan-2023.pdf - PDF

You can find more resources here: hhs.gov/lep.

AHRQ: Protocol Delivery of Care People with Disabilities

The Evidence-Based Practice Center (EPC) within the Agency for Healthcare Research and Quality (AHRQ) has released a protocol for the healthcare delivery of clinical prevention services to persons with disabilities to educate health professionals about how to ensure that people with disabilities have access to the same level of preventative healthcare as persons without disabilities.

People with disabilities often get screened for cancer and other diseases or disabilities at much lower rates than people without disabilities because of barriers such as inaccessible medical equipment, financial costs, transportation, and bias by medical providers towards persons with disabilities.

Read more about the Protocol for Providing Preventative Care to Patients with Disabilities.

HHS: Nominations Long COVID Committee

U.S. Department of Health and Human Services (HHS) announced the establishment of the HHS Secretary’s Advisory Committee on Long COVID. This committee is called for in the National Research Action Plan on Long COVID, published in April of 2022. The advisory committee will bring perspectives from outside the government to make recommendations on research and innovation for a whole-of-government response to the longer-term impacts of COVID-19 and associated conditions.

Nominations are due by January 16, 2024. People with multidisciplinary experience supporting and caring for those affected by Long COVID are encouraged to apply. HHS is specifically interested in receiving nominations of people who have had Long COVID and other disability stakeholders. Nominations are being sought from representatives of:

  • Long COVID and related groups
  • Individuals living with Long COVID and organizations directly engaged in supporting people living with Long COVID. 
  • Professional associations
  • Medical professional, behavioral health, and human services associations that advocate for practitioners caring for people with Long COVID, including those working in the primary health care system.
  • Disability and chronic illness groups
  • Associations, advocates, researchers, or organizations focused on disability and chronic illness and their possible interplay with Long COVID. 
  • Public health and related groups
  • Public health groups supporting communities in addressing the impacts of Long COVID.
  • Health care and social care providers
  • Clinical care settings and health systems involved in providing care for patients with Long COVID, including in underserved areas, such as rural communities and communities disproportionately impacted by Long COVID. 
  • Employee and employer-related groups
  • Employee and employer experts, attorneys, or organizations involved in addressing the impacts of Long COVID in the workplace, including discrimination. 
  • Research
  • Researchers and research institutions involved in Long COVID and associated conditions research. 
  • Non-voting industry representatives
  • People involved in, or representing those involved in, Long COVID research and development, including prevention, diagnostics, and treatment will be designated to represent the interests of this sector. 

Please see the Federal Register Notice for more details and information on how to apply. 

ACL: National Survey on Health and Disability

The University of Kansas Institute for Health and Disability Policy Studies — funded by ACL's National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) — is seeking adults with disabilities to complete the 2023 National Survey on Health and Disability (NSHD). 

The NSHD gives voice to the concerns of people with disabilities and documents their experiences with a variety of issues, including access to health care, insurance coverage, housing, transportation, Long COVID, employment, education, and more. The survey is open to U.S. adults 18 and older with any disability and/or health condition.

For more information, please call 855-556-6328 (Voice/TTY) or email [email protected]. Participants may complete the survey by phone.

USDOE: Civil Rights Data, 2020-2021

The U.S. Department of Education’s (Department) Office for Civil Rights (OCR) released new civil rights data from the 2020–21 school year, offering critical insight regarding civil rights indicators during that coronavirus pandemic year. OCR also released seven data reports and snapshots, including A First Look: Students’ Access to Educational Opportunities in the Nation’s Public Schools, which provides an overview of these data and information.

OCR’s Civil Rights Data Collection (CRDC) is a mandatory survey of public schools serving students from preschool to grade 12. The purpose of the CRDC is to provide the federal government and members of the public with vital data about the extent to which students have equal educational opportunities required by federal civil rights laws. While OCR generally collects the CRDC biennially, the 2020-21 CRDC is the first published since the 2017-18 collection (which was released in 2020), because OCR paused the collection due to the pandemic. OCR’s 2020-21 CRDC contains information collected from over 17,000 school districts and over 97,000 schools. These data include student enrollment; access to courses, teachers, other school staff, and the Internet and devices; and school climate factors, such as student discipline, harassment or bullying, and school offenses.

  • K-12 students reported to school employees over 42,500 allegations of harassment or bullying on the basis of sex, sexual orientation, race, disability, or religion.
  • Forty percent of allegations of harassment or bullying was on the basis of sex, 29% was on the basis of race, 19% was on the basis of sexual orientation, 9% was on the basis of disability, and 3% was on the basis of religion.
  • When considering their overall enrollment, K-12 students with disabilities were also overrepresented in discipline outcomes.
  • Students with disabilities represented 17% of K-12 student enrollment but accounted for 29% of students who received one or more out-of-school suspensions and 21% who received expulsions.
  • Approximately 52,800 K-12 students were physically restrained, mechanically restrained, and/or placed in seclusion at schools.
  • Boys, Black students, students of two or more races, and students with disabilities who received services under IDEA were subjected to restraints and seclusion at higher percentages than their overall K-12 enrollments.
  • Students with disabilities who received services under IDEA represented 14% of K-12 student enrollment but accounted for 81% of students physically restrained, 32% of students mechanically restrained, and 75% of students secluded.

Read the report here.

Other CYSHCN Policy-Related Materials

Urban Institute: Kids’ Share Report

The 17th annual edition of Kids’ Share provides an updated analysis of federal expenditures on children from 1960 to 2022 and projected spending across the next decade.

Following historic highs driven by pandemic-related spending, they find that federal expenditures on children declined in 2022 and are expected to continue with this trend – even before any additional cuts that may result from Congress’s current budget negotiations. 

Key findings include:

  • Federal expenditures per child were about $9,910 in 2022, down from the pandemic-related high reached in 2021. Federal expenditures on children are expected to continue declining as temporary relief funding is spent down.
  • The child poverty rate fell from 12.6 percent in 2019 to 5.2 percent in 2021, largely as a result of pandemic-related emergency relief programs. With the decline in emergency spending, child poverty returned to pre-pandemic levels in 2022 (12.4 percent).
  • The $609 billion invested in children in 2022 was 10 percent of all federal outlays. The children’s share of federal outlays is projected to decline to 6.2 percent over the next decade, falling below interest payments on the national debt starting in 2023. 

A related blog post discusses how despite potential long-term returns, federal investment in children is expected to continue declining.

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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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