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Washington DC Update 12/8/21
Government shutdown - averted! A continuing resolution passed in both the House and Senate last week extending funding of existing government programs until February 18, 2022.

Now, what to do about the debt ceiling? There has been some discussion of including it in the Defense bill. There is also talk of possibly including it in end-of-the-year must-pass Medicare bills (billions in automatic cuts to Medicare that will roll out Jan. 1, unless Congress intervenes).

Build Back Better reconciliation bill… still building. The bill remains before the Senate, but their focus remains on the Defense bill and debt ceiling. There is still time to share with your members of Congress about how important the investments in Medicaid, Home and Community-Based Services, childcare, paid leave, etc., are for CYSHCN and their families!
From the White House
Statement: Omnicron Plan and More
President Biden released a statement outlining new actions to fight the variants and protect Americans as we head into the winter months.

Notes on Two Aspects of Plan that May Affect CYSHCN Access
At-home testing: The plan to expand free at-home testing could help eliminate barriers to access testing for CYSHCN, their families and so many others, however, many hurdles exist already to implementation. The administration wants to require private health insurers to reimburse customers who buy rapid tests, which have been in short supply in many parts of the U.S. and cost more than they're sold for abroad. But it's unclear how consumers with private insurance will get reimbursed for tests, how long they'll have to wait — and how often payment claims will be denied. Those who are uninsured or who have Medicare or Medicaid won’t be able to access the new insurance reimbursement program. Stay tuned!
COVID-19 anti-viral pill: With the FDA poised to authorize the first Covid-19 antiviral pill for at-home use as soon as this week, regulators and health providers are already deliberating about which patients would benefit most from the drugs. The FDA will likely specify which “high risk” populations should have access to the Merck-Ridgeback Biotherapeutics pill if they contract Covid-19, particularly after its advisory panel’s close vote and concerns about risks for pregnant people. That still will leave doctors and other providers on the hook to decide whether to prescribe the pill — and to do it within five days of a patient showing symptoms — to realize the potential benefits. Supply will be limited to start.

Fact Sheet: Advancing Disability Inclusive Democracy in the United States and Globally
The White House released a Fact Sheet on International Day of Persons with Disabilities (December 3, 2021) highlighting some of the steps the administration has taken to promote diversity, equity, inclusion, and to eliminate the barriers to full participation that many with disabilities continue to face.

Briefing Invitation
Briefing for Disabled Americans on Thursday, December 9 at 2:00 pm ET hosted by the White House Office of Public Engagement. This call will be the first in a series of monthly open registration, closed press opportunities for you to hear directly from the White House about updates impacting people with disabilities and their allies. All are welcome! RSVP Here.
New Bill: Work Without Worry Act
Adults with disabilities who qualify for Social Security disabled adult child or childhood disability (DAC) benefits want to explore their ability to work. However, under current law, some of these young adults fear that if they try to work they will lose future DAC benefits. This bill promotes financial security by ensuring that any past earnings from work – no matter how much – will not prevent an otherwise eligible individual from receiving a Social Security DAC benefit from their parent’s work history (if the individual’s medical impairment began before age 22). If an individual with a disability that began before age 22 works enough to become insured for Social Security based on their own earnings, they will receive the larger of the benefits from either their parent’s work history or the benefit from their own work history. This bill also treats all individuals with disabilities that began before age 22 the same – no matter when their parents claim Social Security benefits. Introduced earlier in the summer, S.2018/ H.R. 4003 has great bipartisan support (Larson (D-CT) and Reed (R-NY) in the House and Wyden (D-OR) and Cassidy (R-LA) in the Senate) and will likely pick up steam in the new year.

Additional Work Without Worry information:

Blog posts:
New Bill: Charlotte's Bill
In February 2021, Congresswoman Jaime Herrera Beutler (R-WA) and Katie Porter (D-CA) introduced H.R. 1235, the Charlotte Woodward Organ Transplant Discrimination Prevention Act. On December 2, 2021, Senators Marco Rubio (R-FL) and Maggie Hassan (D-NH) introduced companion legislation in the Senate. The bill prohibits discrimination based solely on disability before, during, and after an organ transplant procedure. Although more than 25 states currently prohibit organ transplantation discrimination, discrepancies across state laws and delays in delivering relief to patients have made enforcement difficult. This legislation aims to reinforce and supplement rights established and supported by existing civil rights laws, such as the Americans with Disabilities Act, Sec. 504 of the Rehabilitation Act of 1973, and Section 1557 of the Affordable Care Act.

RELATED Request for Information: Organ Transplantation
The U.S. Department of Health and Human Services, through the Centers for Medicare & Medicaid Services (CMS) issued a Request for Information (RFI) to solicit stakeholder and public feedback that will be used to inform potential changes and future rulemaking to improve the organ transplantation system and seek to enhance the quality of life of those living with organ failure.

This RFI seeks feedback from those on organ transplant waitlists, transplant recipients and their families, living donors and their families, those who sign up to be posthumous donors, and chronic kidney disease and end-stage renal disease (ESRD) patients. This feedback will help inform future regulatory requirements that transplant programs, organ procurement organizations (OPOs), and ESRD providers and suppliers would need to meet to participate in the Medicare and Medicaid programs.

The RFI is posted here. Comments must be submitted by February 1, 2022.
CMS State Medicaid Director Letter: HCBS
The Centers for Medicare & Medicaid Services (CMS) released a State Medicaid Director Letter (SMDL) that provides guidance to states on a provision of the Sustaining Excellence in Medicaid Act of 2019 that allows them to adopt special financial methodologies for Medicaid applicants and beneficiaries who need home and community-based services (HCBS). The provision permits states to only apply certain income and/or asset disregards to individuals who need home and community-based services.

This new option permits states to adopt higher effective income and resource eligibility standards for people who need HCBS, either for all such individuals or for a particular cohort of such individuals; a critical tool to use in their efforts to “rebalance” their Medicaid coverage of long-term services and supports.
Report: Financial and Workplace Caregiving Policy Roadmap for State Officials 
This publication from the National Academy for State Health Policy (NASHP) seeks to provide a roadmap for state officials to better understand the state policy landscape for supporting family caregivers of older adults.
NOTE: Although this report is specific to caregivers of older adults, it is worth exploring as many of the policy levers and innovations it describes translate into strategies for partnership with state and local governments and the private sector to support caregivers of CYSHCN.
Report and Toolkit: Grandfamilies
Initial Report to Congress: Supporting Grandparents Raising Grandchildren (SGRG) Act by the U.S. Department of Health and Human Services, Administration for Community Living, Advisory Council to Support Grandparents Raising Grandchildren.
The Advisory Council to Support Grandparents Raising Grandchildren's initial report to Congress is a culmination of a two-year, multi-faceted effort that gathered information from kin and grandparent caregivers of children across the country. It provides an overview of the many complex issues faced by these families and recommendations for addressing them. The 22 recommendations fall under five priority areas:

  • Awareness of/Outreach to Kin and Grandparent Caregivers
  • Kin and Grandparent Caregiver Engagement
  • Services and Supports for Kinship Families and Grandfamilies
  • Financial and Workplace Security for Kin and Grandparent Caregivers 
  • Research, Data, and Evidence-Supported Practices

TOOLKIT Latino Grandfamilies: Helping Children Thrive Through Connection to Family and Cultural Identity
This Generations United toolkit provides cultural context and recommendations to help organizations and individuals enhance their skills to help children and caregivers in grandfamilies. Tools include:

  • Information on the diversity of Latinos and how to serve them with cultural competence that leverages their many strengths.
  • The benefits and strengths of preserving and restoring cultural identity.
  • Practice and policy recommendations for addressing systemic racism and biases that limit existing support to Latino grandfamilies and the children they raise.
Public Comment: Broadband Affordability Program
On November 18, 2021, the FCC released a public notice seeking comment on the requirements for the Affordable Connectivity Program and a timeline for its rapid implementation. The Infrastructure Investment and Jobs Act extends and modifies the Emergency Broadband Benefit Program to a longer-term broadband affordability program to be called the Affordable Connectivity Program. Among other provisions, the public notice seeks comment on setting minimum service standards and system requirements for connected devices, noting specific requirements may be needed to ensure such services and devices are accessible to and usable by individuals with disabilities. 
Interested parties may file comments by accessing the Electronic Comment Filing System. All filings must reference WC Docket No. 21-450. People with disabilities who need assistance to file comments online may request assistance by email. Comments are due December 28, 2021.
Issue Brief: Performance Measures to Incentivize Social Care
This issue brief from State Health & Value Strategies notes that growing recognition of socioeconomic adversity impacts on health outcomes has led the health care sector to support initiatives that address social determinants of health (SDOH). There is an opportunity to leverage performance measures to further incentivize these interventions and track adoption.

Several social care use cases are relevant to Medicaid agencies: monitoring MCOs’ compliance with specific state or federal initiatives/requirements; advancing practice adoption by applying financial incentives, withholds, or public “scorecard” reporting; and informing future program development.

This brief explores opportunities for state Medicaid agencies to implement performance measures with contracted entities that could strengthen their growing interest in social care and highlights several barriers to those applications.
ICYMI: CDC reports on Autism identification and prevalence
CDC has released two new reports on the prevalence and early identification of autism spectrum disorder (ASD) in children.

Key findings include:
  • An estimated 2.3% or 1 in 44, 8-year-old children have been identified with ASD according to an analysis of 2018 data.
  • Racial and ethnic disparities persist.
  • Data suggest progress in the early identification of children with ASD. 
  • Community differences in ASD identification exist. 
Policy Conference: Families USA's Health Action Conference 2022 
Registration is now open for Families USA’s Health Action Conference: Health Justice Now, January 25-26, 2022.

Daniel Tsai will join Health Affairs Editor-in-Chief Alan Weil in a conversation to discuss the proactive policy agenda for children laid out by CMCS focused on three key areas: coverage and access; equity; and innovation and whole-person care.

Families USA strongly believes in having a diversity of voice at their conference. If cost is a barrier to attending, consider applying for a scholarship.  
Questions can be directed to HealthActionConference@FamiliesUSA.org.   

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.