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Washington DC Update 1/19/22
“Our lives begin to end the day we become silent about things that matter.”- Martin Luther King Jr.

This King quote is something that we live by as families in the care of our loved ones and as family leaders in efforts to bring about systems change. While 2022 has certainly begun in earnest by challenging us with Omicron, weather, politics as usual, hostage situations and so much more, may the words of MLK Jr. continue to inspire and guide you to act no matter the task at hand.

“No Celebration Without Legislation”
Raising their voices strongly in calling for Voting Rights legislation, the family of Martin Luther King Jr. implored action on the voting rights legislation. And so, the Senate returns today, on what was slated to be a recess week, to take action on the Democrats’ efforts to enact federal elections reform and restore key oversight protections from the Voting Rights Act, a move that is sure to lead to a showdown over the chamber’s 60-vote filibuster threshold. Senate Democrats will gather in person tonight for a special caucus meeting ahead of this week’s risky action for the caucus, which still is not unified on altering the chamber’s filibuster rules in order to pass the elections and voting rights legislation.

A vote is expected as soon as Wednesday. To pass, 60 votes are required; and expected to come up short. That will pave the way for a vote on changing the Senate’s rules. It is still not clear what form that will take – there are not enough votes for eliminating the filibuster outright – but multiple options for tweaking the process have been on the table in recent weeks.

Build Back Better
Some House Democrats are urging party leadership to break up Build Back Better (BBB) into a series of votes on popular planks. While on the surface this might appear to be a viable strategy, there is concern that breaking BBB up will not only water down the overall intended impact of the agenda, but may lead to many small bills that will ultimately not pass.
From the Administration
White House Disabled Americans Stakeholder Call

The next Disabled Stakeholder call will be held on January 20, 2022 at 2pm ET.
ASL & CART will be provided.

Please register by completing this form. This meeting will be closed press. 

CMS COVID-19 Vaccine Mandate: Healthcare Workers - New Deadline

Following the January 13, 2022 decision by the Supreme Court to uphold the vaccine mandate for health care workers, CMS administrator Brooks-LaSure made the following statement, which includes links to the rule and guidelines. Health care workers in the 24 states that are newly subject to the Centers for Medicare and Medicaid Services' COVID-19 vaccine mandate will need to get their first shot by February 14 and final shot by March 15, according to new guidance released by CMS Friday. Facilities in the 24 states subject to the new guidance will also need to demonstrate that they've developed policies and procedures to make sure all facility staff are vaccinated against COVID-19 by February 14. The guidance specifically applies to Alabama, Alaska, Arizona, Arkansas, Georgia, Idaho, Indiana, Iowa, Kansas, Kentucky, Louisiana, Mississippi, Missouri, Montana, Nebraska, New Hampshire, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Utah, West Virginia, and Wyoming.

More on the vaccine mandate for health care workers can be found at this Kaiser Health News link.

CDC Apology and Communication

As this Disability Scoop article reports, CDC Director Walensky met with representatives from The Arc, the Autistic Self Advocacy Network, the American Association of People with Disabilities, and seven other organizations Friday afternoon to apologize for what the CDC described as a “hurtful, yet unintentional, statement pertaining to COVID-19 deaths and comorbidities.” The CDC said that Walensky also committed to regular meetings between senior leaders at the agency and disability groups. In other conversations, CDC Director Walensky has vowed to improve CDC communication overall by making messaging clear. 

Updated Comprehensive Preventive Care and Screening Guidelines for Women and for Infants, Children, and Adolescents 

The U.S. Department of Health & Human Services (HHS) announced that the Health Resources and Services Administration (HRSA) has updated comprehensive preventive care and screening guidelines for women and for infants, children, and adolescents. Among a number of updates, for the first time, the guidelines will require such group health plans and insurance plans to provide coverage without a co-pay or deductible for double electric breast pumps.

Infants, Children, and Adolescent Preventive Care and Screenings - Guidelines:
The Bright Futures Program develops recommended evidence-informed guidelines for preventive care screenings and routine visits for newborns through adolescents up to age 21. The American Academy of Pediatrics (AAP) convenes a team of pediatric primary care experts with funding from HRSA to review scientific evidence and new standards annually and recommend updates to the Bright Futures Periodicity Schedule based on the latest research and public comments.

On December 30, 2021, HRSA also accepted updates to existing Bright Futures guidelines. These updates include adding universal screening for suicide risk to the current Depression Screening category for individuals ages 12 to 21, and new guidance for behavioral, social, and emotional screening. HRSA has also accepted new guidelines for assessing risks for cardiac arrest or death for individuals ages 11 to 21 and assessing risks for hepatitis B virus infection in newborn to 21 year-olds.

ACA Women’s Preventive Care and Screening - Guidelines
The Women’s Preventive Services Guidelines help clinicians determine what services they should routinely provide their patients. The Women’s Preventive Services Initiative  (WPSI) convenes a multidisciplinary team of women’s health experts to regularly review and recommend updates on a rolling basis to the guidelines based on the newest research and public comments, through a cooperative agreement with the American College of Obstetricians and Gynecologists (ACOG) funded by HRSA.
Under the Affordable Care Act (ACA), certain group health plans and insurance issuers must provide coverage with no out-of-pocket cost for preventive health services within these HRSA-supported comprehensive guidelines. Group health plans and insurance issuers subject to these requirements will be required to provide coverage without cost-sharing of new and updated services in the Women’s Preventive Services Guidelines and the Bright Futures Periodicity Schedule during plan years beginning in 2023.

To learn more about the updated guidelines, visit: https://www.hrsa.gov/womens-guidelines
Short videos: Intersection of Culture, Language, and Identity with Person-centeredness
Recognizing that there are few resources that directly address the intersection of culture, language, and identity with person-centered thinking, planning, and practice, the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) has released a series of short videos in which community members share their thoughts on how their racial and cultural identities shape their expectations and views of support systems.
Medicaid and Unwinding the Public Health Emergency
Two helpful resources as things ramp up to unwind in your state:

This toolkit, created by Manatt Health, 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 ensuring eligible individuals retain coverage in Medicaid/CHIP and easing transitions to the Marketplace. The toolkit features guidance released by CMS for states on working with managed care plans and can be found HERE.

This NHeLP blog post also offers helpful guidance entitled Unwinding the Public Health Emergency: Checklist for Redeterminations.
Webinars of Interest
LTSS: Transition from 1915(c) to HCBS under 1915(b)
January 26, 2:00pm EST | Register Here
This webinar will discuss Oneida Nation’s experience during the transition from a 1915(c) waiver to providing home- and community-based services (HCBS) under 1915(b). Topics will include the problems encountered and possible solutions.
  • Describe Oneida Nation’s journey from providing HCBS based on a fee-for-service model to providing those services based on a managed-care model
  • Summarize how 1915(b) waivers differ from 1915(c) waivers
  • Identify unique problems with 1915(b) waivers that must be resolved during the transition from 1915(c) waivers
  • Suggest strategies to ease the move into a 1915(c) environment

Promising Practice: HCBS Series
January 27, 4:00 - 5:30pm EST | Register Here
The Administration for Community Living and Centers for Medicare and Medicaid Services invite you to a webinar in their Promising Practices Series: The Home and Community-Based Services (HCBS) Settings Regulation: Where Are We Now and Where Are We Going

The requirements of the Home and Community-Based Services (HCBS) Settings Rule provide an opportunity to enhance the quality of HCBS and provide additional protections to individuals that receive services. With the transition period coming to a close on March 17, 2023, it’s important to understand both the current state of the transition and what will be needed going forward to ensure continued compliance.

Speakers include: Alison Barkoff, Principal Deputy Administrator, Administration for Community Living, and Melissa Harris, Deputy Director, Division of Long Term Services and Supports, Disabled and Elderly Health Program Group, Centers for Medicare & Medicaid Services.

Health Affairs Complex Care Forum
January 28, 1:00 - 2:30pm EST | Register Here
Join Health Affairs Editor-in-Chief Alan Weil on Friday, January 28, 2022, for a virtual forum on the topic, spotlighting key elements from the collection and elevating voices of patients, caregivers, and advocates who know firsthand the practical and policy challenges of caring for this growing element of America’s health care population. Presenters will include:

  • Connie L. Montgomery, Patient and Family Advisor, PFCCpartners, and Family Faculty Member, Medical University of South Carolina

  • Victor Murray, Senior Director of Community Engagement & Capacity Building, Camden Coalition

  • Kacy Seitz, Children’s Mercy Family Advisory Board, and Chair, Beacon Complex Care Clinic Patient & Family Advisory Board

Register for this FREE event and check out other free upcoming events.

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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.