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Washington DC Update 5/18/22
It is with great sadness we share that Julie Beckett, one of the founders of Family Voices, passed away on Friday, May 13, at her home in Cedar Rapids, Iowa.

Passionate, visionary, and inexhaustible, Julie was an amazing advocate for improving health care for children with special health care needs and disabilities throughout our country for over 35 years, beginning with her daughter Katie Beckett. As Julie wrote in an advocacy article for the ACLU:

"There comes a moment in parenting where you discover strength you didn't know you had--all because your child needs you. For me, that moment began 39 years ago when my daughter Katie contracted viral encephalitis, an inflammation of the brain at just four months old. It compromised her tiny immune system and did irreversible damage to her body, requiring her to use a ventilator to breathe and leaving her partially paralyzed. Because of Medicaid rules at the time, we could not take Katie home to manage her care, as we wished, but instead, we were forced to keep her hospitalized for three years as we fought the system. Our family reached out to everyone until eventually word of Katie’s plight reached President Ronald Reagan himself, who created the Katie Beckett Waiver in an act of compassionate conservatism. The creation of a new federal program allowed people with disabilities to use Medicaid dollars to get health care while living in the community. Ultimately, the Katie Beckett Waiver took effect and Katie came home." (full article)

That waiver was the first Medicaid Home and Community Waiver, a program that has gone on to allow thousands of families to care for their loved ones at home rather than in institutions. Julie and Katie continued to be powerful advocates for families of children with special health care needs and disabilities. Katie Beckett passed away on May 18, 2012, at 34 years old (more than three times the age doctors said she would reach). This NPR article shares more about Katie's story

As a founder of Family Voices, along with Polly Arango and Josie Woll, Julie was a key family partner with MCHB in helping to draft the concepts of family-centered, culturally competent, coordinated community-based care. Julie was a passionate spokesperson for Family-to-Family Health Information Centers (F2Fs) and she spent countless hours on Capitol Hill convincing members of Congress that they needed to provide federal funding for F2F programs, leading to the federally-funded F2F program that has been in place since 2005. In addition to her critical roles as co-founder and staff of Family Voices, Julie served in multiple roles on the Family Voices Board of Directors.

Beyond Family Voices, Julie later became Co-Chair of the Executive Committee for the Family Partnership Network under the American Academy of Pediatrics (AAP) and served on the AAP Parent Advisory Group with the Section on Home Care, in addition to other continuous advocacy efforts over the years. 

At its 2021 national conference, Family Voices honored Julie with The Family Voices Legacy Award in recognition of her outstanding lifetime contributions to health care policy and services that have improved the lives of children with special health care needs and their families. You can watch the tribute video here.

Our hearts are full of gratitude for all that Julie has done to help families and for the legacy of leadership that Julie leaves. May it inspire each of us to recognize the power of our voices to improve the world around us. 
Legislative Updates
Infant Formula Shortage
On May 17, 2022, House Appropriations Chair Rosa DeLauro (D-CT) introduced an emergency supplemental funding bill that seeks to address the growing shortage of infant formula in the U.S. Specifically, the legislation would provide $28 million to the Food and Drug Administration (FDA) to address the current shortage, as well as requirements that FDA take necessary steps to prevent fraudulent products from entering the U.S. market. Lawmakers are also poised to consider a bill out of the Education and Labor Committee that would provide flexibility on the types of formula that can be purchased through the Women, Infant, and Children (WIC) program. While lawmakers on both sides of the aisle have expressed support for addressing the shortage at the federal level, the timing of these votes, as well as the overall level of support within the 50-50 Senate, is unclear as of now.

SSI Savings Penalty Elimination Act
On April 26, 2022, Senator Brown (D-OH) and Senator Portman (R-OH) introduced the bipartisan SSI Savings Penalty Elimination Act (S. 4102). The Supplemental Security Income (SSI) program provides important supports to people with disabilities and their families.
  • The SSI asset limits have not been raised since 1989.
  • Right now, SSI recipients are only allowed to have $2,000 in assets ($3,000 for couples) before they become ineligible for SSI benefits.
  • The bill would increase the current asset limits in the SSI program to $10,000 for individuals and $20,000 for couples. This would allow SSI recipients to save for emergencies and maintain their SSI benefits.
  • The bill would also index the limits to inflation so they would be adjusted annually based on data from the Consumer Price Index.
You can find the full text of the bill HERE.

COVID-19 Funding
Negotiations continue this week on a new COVID-19 funding bill for health care needs. Reports out of Capitol Hill suggest that a new COVID-19 funding package for health care needs may occur soon as the Senate’s efforts on COVID-19 funding is on ice right now. The structure of the new legislation is not clear and will require navigation of wide divisions over funding offsets before additional funding for testing, therapeutics, vaccines, and more can be passed in both chambers.

House E & C Markup
The House Energy and Commerce Committee announced a markup to consider six bills that recently cleared the Health Subcommittee, including a bipartisan package to reauthorize several programs administered by the Substance Abuse and Mental Health Services Administration (SAMHSA) (TRP summary).
From the Administration
White House: More Free At-Home COVID Tests
On May 17, 2022, the Biden Administration announced that COVIDTests.gov is open for a third round of ordering. U.S. households are now able to order an additional eight free at-home tests at COVIDTests.gov—bringing the total number of free tests available to each household since the start of the program to 16. As the highly transmissible subvariants of Omicron drive a rise in cases in parts of the country, free and accessible tests will help slow the spread of the virus.

People who have difficulty accessing the internet or need additional support placing an order can call 1-800-232-0233 (TTY 1-888-720-7489) to get help in English, Spanish, and more than 150 other languages, 8 am to midnight EST, 7 days a week. For more information, people can visit: https://www.covid.gov/tests/faq

White House: Affordable Connectivity Program
As part of the Bipartisan Infrastructure Law, the President and Vice President worked with Democrats and Republicans to create the Affordable Connectivity Program (ACP), which allows tens of millions of American households to reduce their internet service costs by up to $30/month (or $75/month on Tribal lands).
  • The Biden-Harris Administration has secured commitments from 20 leading internet providers—covering more than 80% of the U.S. population across urban, suburban, and rural areas—to either increase speeds or cut prices, making sure they all offer ACP-eligible households high-speed, high-quality internet plans for no more than $30/month.
  • Internet providers who have joined in this effort range from large providers like AT&T, Comcast, and Verizon serving dozens of states, to smaller providers serving rural areas like Jackson Energy Authority in Tennessee and Comporium in North Carolina.
  • The government is undertaking several initiatives to reach out and ensure families access these services. For example, GetInternet.gov is a simple, easy-to-use website with details on how Americans can sign up for ACP and find participating internet providers in their area. You can find the full Fact Sheet HERE.
Other Policy Related Materials of Interest
In case you missed it (ICYMI): Money Follows Person (MFP) and Home and Community Based Services (HCBS)
Recording of: How to Advocate for and Talk About Home and Community Based Services webinar recording and Factsheet The webinar offered a background of HCBS, the goal of HCBS for people with disabilities, and the importance of home care workers (who tend to be mainly women of color) receiving fair wages and treatment plus appropriate training. The webinar shared research-based best practices for HCBS advocacy messaging, including individual stories from people with disabilities about how HCBS enables them to live at home and in the community. A related factsheet and slides are also available through the link above.

Related Fact Sheet: In March 2022, the Centers for Medicaid and Medicare made $110 million available to assist states and territories that do not have MFP programs. This money will help states prepare to launch their MFP program. Each new state or territory can receive up to $5 million. The following fact sheet created by the Community Living Policy Center, Reducing Costs for Families and States by Increasing Access to Home and Community-Based Services Factsheet, lays out “$110 million reasons” why a state should apply for MFP funding. If you live in AL, AZ, FL, IL, KS, MI, MS, NE, NH, NM, OR, UT, VA, WY, CNMI, Guam, American Samoa, Puerto Rico, or the U.S. Virgin Islands, consider using this fact sheet to get the word out and advocate with your state!

PHE Potpourri: Materials for the Public Health Emergency (PHE) Unwinding
Important NOTE: The Public Health Emergency (PHE) is scheduled to end on July 17. At the last extension of the PHE, HRSA Secretary Becerra indicated that the administration would give 60 days notice prior to that date confirming the ending. May 16 was that 60-day mark and no notice was given. This signals a likely extension of the PHE to the fall amidst rising COVID cases nationally.

From the AAP and Georgetown CCF
An Op-Ed and blog post focused on the benefits of Medicaid continuous eligibility for children and urging the Biden Administration to extend the PHE. Here are some related social media messages to consider posting on this topic.

From the Kaiser Family Foundation (KFF)
Between 5.3 million and 14.2 million people could lose Medicaid coverage following the end of the public health emergency and federal continuous enrollment requirement. In a new analysis, KFF experts examine two scenarios of how it could play out. A second analysis examines typical Medicaid enrollment patterns before the pandemic.

KFF finds that states will have spent $47.2 billion to handle Medicaid enrollment growth during the pandemic -- and will have received more than twice that in enhanced Medicaid matching money designed to provide states with broad fiscal relief.

It’s all part of KFF’s continuing work examining the implications as the end of the federally-declared public health emergency is on the horizon. See two pieces from KHN about the millions who could lose coverage. Also noteworthy is their brief overview of the major health-related COVID-19 federal emergency declarations that have been made, and the implications for cost, health coverage, and access to care once they come to an end. Much of KFF's work on the topic is collected on their resource page about the implications of ending the public health emergency.

From State Health and Value Strategies
This page provides communications resources designed to support states as they prepare for the various stages of work needed to inform stakeholders and consumers about the upcoming end of the Medicaid continuous coverage requirement. The page shares information with states on how to develop communication plans and messaging templates in several languages.
NOTE for Family-to-Family Health Information Centers (F2Fs): If you are working on the Unwinding with your state agencies, consider sharing and modifying this information to demonstrate F2F expertise in messaging that reaches all families.

This toolkit highlights opportunities for states to leverage managed care plans to support unwinding the Medicaid continuous coverage requirement. Close collaboration between states and managed care plans will be essential to ensure eligible individuals retain coverage in Medicaid/CHIP and ease transitions to the Marketplace. The toolkit, updated as of April 26, 2022, features guidance released by CMS for states on working with managed care plans.
NOTE: If you are working on the Unwinding with your state agencies, consider using this opportunity to suggest strategies to foster closer collaboration between Medicaid and MCOs. Although these materials and the current interaction are focused on the Public Health Emergency, it is a tremendous opportunity to be a part of constructive efforts to tighten things up between Medicaid and MCOs in a way that may benefit other programs, such as pediatric home health care, that also experience tremendous splintering between the state and contracted MCO.

State reporting templates and guidance released by CMS in March specify both the data and the metrics that states will be required to submit to monitor enrollment and renewal efforts as they resume routine Medicaid and CHIP operations following the end of the PHE. This blog post summarizes the reporting requirements and presents a set of considerations for states as they begin implementing new unwinding policies, procedures, and reporting.
NOTE for F2Fs: Read through this digestible summary of the metrics states will be required to submit and consider bringing to the next meeting with your state agencies. Metrics are one of the most critical tools family-led organizations have to be able to steer and guide the care of our children. They provide for outcome measurement, as well as routes to accountability. Arm yourself to lead such conversations with the state agencies.

CCHP: State of Telehealth Policy
The Center for Connected Health Policy (CCHP) released its bi-annual summary of state telehealth policy changes for Spring 2022. Additionally, CCHP produced a state summary chart (a SUPER helpful and digestible table) showing where states stand on many key telehealth policies, as well as an infographic highlighting their key findings. 
The information in the summary report covers updates in state telehealth policy made between January and April 2022.
NOTE: Many states continue to keep their temporary telehealth COVID-19 emergency policies siloed from their permanent telehealth policies. These temporary policies are not included in this summary report, although they are listed under each state in the online Policy Finder under the COVID-19 category. In instances where the state has made policies permanent or extended policies for multiple years, CCHP has incorporated those policies into this report. 

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.