Having trouble viewing this email? Click here
Washington DC Update 5/12/22
Legislative Updates
Ukraine and COVID Appropriations
Both chambers of Congress resumed legislative business this week as leadership looks to break the logjam on a pair of supplemental appropriations requests. Already this week, lawmakers have a bipartisan agreement to move $39.8 billion for Ukrainian military and humanitarian assistance forward. The House will vote on the Ukrainian aid this week and the Senate will likely follow by next week. Originally coupled with the Ukrainian aid package, additional funding for COVID is now separate and lawmakers are still searching for common ground. 

House Mental Health Package
House Energy and Commerce (E&C) Chair Frank Pallone (D-NJ) and Ranking Member Cathy McMorris Rodgers (R-WA) introduced a bipartisan package of bills that seeks to improve mental and behavioral health treatment, as well as provide substance use disorder (SUD) care called Restoring Hope for Mental Health and Well-Being Act of 2022.

Legislative text is available HERE.

A Section-by-Section summary is available HERE

On Wednesday, May 11, the health subcommittee of E&C will meet to markup this bill and other health-related bills.

What is markup? The process by which congressional committees and subcommittees debate, amend, and rewrite proposed legislation. The connotation of a markup session is that the language of the original measure is analyzed line-by-line or section-by-section, and then marked up, i.e., changed or amended.

Reconciliation. Whatever happened to Build Back Better? It is still in play on the Hill. Sources say the bulk of negotiation is between the White House and Senator Manchin. Meanwhile, advocates of all types continue to work on promoting specific types of issues and programs, such as home & community-based services (HCBS), child care, and paid leave.

For example, on Wednesday, March 23, the U.S. Senate Special Committee on Aging Chairman Bob Casey (D-PA) and Ranking Member Tim Scott (R-SC) chaired a hearing entitled An Economy That Cares: The Importance of Home-Based Services. The hearing examined how expanded access to home-based care will provide financial relief for American families and enable millions of family caregivers to get back to work. 
The hearing highlighted data such as:
  • More than one in five Americans are family caregivers.
  • Caregiving places substantial financial burden on families as family members forgo jobs or promotions, or work reduced hours in order to provide care.
  • Home care workers provide vital services to seniors and people with disabilities, including support with eating, bathing, and moving around the house and neighborhood, and represent one of the fastest-growing workforces in the country.
  • Over 3 million people receive home-based care, but there are many individuals who need services and do not have access.
  • Currently, more than 820,000 Americans are on waitlists to receive home care and many wait years for essential services.
Witnesses for the hearing included:
  • Brandon Kingsmore, Disability Advocate and Public Speaker, accompanied by Lynn Weidner, Home Care Worker and SEIU Healthcare PA Member, Allentown, PA
  • Alene Shaheed, Home Care Recipient and former Florida Health Justice Project Client, Jacksonville, FL
  • Lisa Harootunian, Associate Director, Health Program, Bipartisan Policy Center, Washington, D.C.
  • Anne Tumlinson, CEO, ATI Advisory and Founder, Daughterhood, Washington, D.C.
From the Administration
ACL report: COVID and People with Disabilities
The Administration for Community Living (ACL) National Institute of Disability, Independent Living, and Rehabilitation Research (NIDILRR) released a report, Impact of the COVID-19 Pandemic on People with Disabilities. The report highlights examples of key research findings on the impact of the pandemic on people with disabilities as well as available resources from the NIDILRR grantee community. 

The report includes findings from studies focusing on specific groups that were particularly hard hit, such as people with intellectual and developmental disabilities, people from marginalized communities, and people with mental health disorders. The report also highlights findings and resources in specific areas of community engagement and participation, rural communities, education services, telehealth, and employment and return-to-work accommodations. Finally, the report identifies research gaps and opportunities for further research.

CMS: Chronic Pain Journey Map
In late 2019, the Centers for Medicare & Medicaid Services (CMS) launched a Chronic Pain Stakeholder Engagement, which focused on understanding more about access to covered care and services for people with chronic pain. They used qualitative research methods and the human-centered design process to understand and visualize the customer experiences living with, providing care for, and treating people with chronic pain. In addition to direct engagement, CMS leveraged data from the Centers for Disease Control and Prevention.

The intent of the Chronic Pain Experience Journey Map (PDF) is to highlight the most prominent barriers experienced by people accessing care and the influencers acting on providers, ultimately affecting the person with chronic pain, their quality of care, and their quality of life. In collaboration with Federal partners, they are exploring where opportunities exist to address these issues under the authorities they collectively have. CMS encourages everyone to explore where opportunities exist outside of the parameters of government to bring ease for those suffering with chronic pain, such as eliminating the stigmas that exist not only for those who suffer with chronic pain, but also those who suffer with behavioral health issues as well as those who suffer from opioid use disorder.

CMS recognizes the impact of pain across its programs and has identified the importance of effective treatment and management of pain in the CMS Behavioral Health Strategy. This work aligns with the CMS Behavioral Health Strategy, the HHS Overdose Prevention Strategy, and important provisions of the SUPPORT Act that address the treatment of pain: Section 6032 which includes a Report to Congress and a CMS Action Plan to Enhance Prevention and Treatment for Opioid Use Disorder, and Section 6086, the Dr. Todd Graham Pain Management Study.

CMS and FCC: Affordable Broadband Connectivity Program
The Centers for Medicare & Medicaid Services (CMS) is working to help build awareness about the Affordable Connectivity Program (ACP), a Federal Communications Commission (FCC) program. The new long-term benefit will help to lower the cost of broadband service for eligible households struggling to afford internet service.
The Affordable Connectivity Program provides:
  • Up to $30/month discount for broadband service;
  • Up to $75/month discount for households on qualifying Tribal lands; and
  • A one-time discount of up to $100 for a laptop, desktop computer, or tablet purchased through a participating provider if the household contributes more than $10 but less than $50 toward the purchase price.

The Affordable Connectivity Program is limited to one monthly service discount and one device discount per household.

Who is Eligible? A household is eligible for the Affordable Connectivity Program if the household income is at or below 200% of the Federal Poverty Guidelines, or if a member of the household meets at least one of the criteria outlined at https://www.fcc.gov/acp.

Two-Steps to Enroll
  1. Go to ACPBenefit.org to submit an application or print out a mail-in application; and
  2. Contact your preferred participating provider to select a plan and have the discount applied to your bill.

Some providers may have an alternative application that they will ask you to complete. Eligible households must both apply for the program and contact a participating provider to select a service plan. 

Issue Brief, Resources, Comments of Interest
In case you missed it (ICYMI): Public Health Emergency Unwinding Resources
State Health and Value Strategies (SHVS) developed this resource page to serve as an accessible one-stop source of information for states in “unwinding” when the Medicaid continuous coverage requirement ends. The Families First Coronavirus Response Act (FFCRA) Medicaid “continuous coverage” requirement has allowed people to retain Medicaid coverage and get needed care during the pandemic. When continuous enrollment is discontinued, states will restart eligibility redeterminations for Medicaid enrollees. While most people will continue to be eligible for Medicaid or Marketplace coverage, the potential for loss of coverage for millions of Americans due to “administrative” reasons is significant, and Black, Latino/a/x, and other people of color will be most at risk. This resource is designed to support states planning for this major coverage event, including developing processes that prioritize coverage retention following the conclusion of the continuous coverage requirement.

NOTE: This site is for state agencies, but provides valuable information that Family to Family Health Information Centers (F2Fs) can use to initiate or enhance partnership opportunities with Medicaid as states plan for the unwinding. The site is organized by topic, such as equity or consumer communication and outreach, and also has insights on the text messaging option.

ICYMI: Racial Equity and Policy Framework
Social programs like Medicaid are supposed to help people, but often they reproduce racial inequities — and sometimes actually create them. That’s because even well-intentioned policymakers can’t always see the disproportionate impact their decisions have on people of color.

But what if there were a tool to help legislators and government officials identify when and how they should be thinking about racism? Well, Jamila Michener has developed one: The Racial Equity and Policy Framework. And on the latest episode of The Dose podcast, she explains how it can be applied to Medicaid’s transportation benefit specifically and to health policy more broadly.

NOTE: Among other things Michener speaks on the podcast about how her research on, and personal experiences with, Medicaid has highlighted the importance of hearing from people impacted by policy choices. She specifically explores the way they have used this framework to examine the Medicaid Transportation benefit.

“You can't really address the ways that racism manifests . . . unless you have people who experience it directly at the table, not only having voice, but also having some power,” she says.

NHeLP: Children’s Mental Health Awareness Month
A selection of resources and case law from the National Health Law Program (NHeLP), which litigates and advocates to protect the rights of children and adolescents to receive the quality services and supports they need, including mental and behavioral health care and services. Consider these resources as possible tools to assist in any efforts in which you are involved to build better community and state responses to children’s mental health:
NHeLP litigation for children’s mental health may be helpful as we contemplate at both the state and federal levels how to meet the rising need for mental health access for children and reimagine care. Consider these settlements as instructive for possible policy recommendations for modifications to care in your state:

NHeLP: Summary of CMS RFI Comments
The Centers for Medicare & Medicaid Services (CMS) issued a Request for Information (RFI) to develop and implement a comprehensive strategy to help ensure equitable access to Medicaid and the Children’s Health Insurance Program (CHIP). In comments, NHelp responds to the RFI questions on issues ranging from eligibility and enrollment, data collection, and access to key services including EPSDT (Early and Periodic Screening, Diagnostic, and Treatment) and long-term services and supports.

NOTE: Family Voices contributed to and joined in several responses submitted to this CMS RFI on behalf of CYHSN, families, and Family-to-Family Health Information Centers (F2Fs). These NHeLP responses are expansive and provide a good idea of the issues raised by many for our children and families. 

Thank you for subscribing to the Washington DC Update newsletter. Please feel free to contact the Family Voices Director of Public Policy and Advocacy, 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.