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Washington, DC Update 3/8/23
In Memoriam
On March 4th, Judy Heumann, lifelong leader disability rights advocate, passed away. The following is an excerpt from a tribute written by the Consortium for Constituents with Disabilities (CCD):
Judy’s life story is well documented by herself and others. Judy participated in the developing and implementing the Individuals with Disabilities Education Act, the Americans with Disabilities Act and the U.N. Convention on the Rights of Persons with Disabilities. Judy was also active in advocating at the local level, and this February provided moving and heartfelt testimony urging the D.C. Council to ensure wheelchair accessible taxi and rideshare service. In recent years, Judy testified to the U.S. Department of Transportation demanding safe and equitable access to air travel and supporting the Air Carrier Access Amendments Act.
Judy’s time as a counselor at Camp Jened, a summer camp for disabled youth, and the lives of fellow counselors and attendees is the subject of the award-winning documentary, Crip Camp. Judy hosted a podcast, The Huemann Perspective, and published her memoir, Being Huemann: An Unrepentant Memoir of a Disability Rights Activist and a Young Adult version, Rolling Warrior.
Judy devoted her life to disability rights, and was a friend, agitator and advocate until the very end.
Additional tributes and articles about Judy Heumann
Legislative Updates
Input Healthcare Workforce Shortages
The HELP Committee is looking to identify bipartisan solutions to address our nation’s healthcare workforce shortages and develop these ideas into legislation. As a first step, the Senate Committee on Health, Education, Labor, and Pensions held a hearing on February 16th, “Examining Health Care Workforce Shortages: Where Do We Go From Here?” The hearing looked to address the causes of the current healthcare workforce shortages, and to look for potential solutions. Now the HELP Committee is requesting input from all stakeholders to better understand the drivers of healthcare workforce shortages and hear ideas on potential solutions. Comments and suggestions can be submitted to [email protected] until March 20th.

Senator Casey Introduces the Better Care Better Jobs Act
On January 26th, Senator Bob Casey (D-PA) introduced the Better Care Better Jobs Act (S.100). The bill is originally cosponsored by 39 Democratic Senators. The bill will:
  • Increase Medicaid funding for Home and Community Based Services (HCBS) with a 10 percent increase in the federal match
  • Increase funding for administrative activities
  • Provide more benefits for direct care workers
  • Improve oversight
  • Make spousal impoverishment protections permanent, and
  • Make the Money Follows the Person program permanent.
The bill will improve HBCS for millions of people with disabilities, their families, and direct support professionals. The bill has been referred to the Senate Finance Committee.

Medical Device Nonvisual Accessibility Act
Congresswoman Jan Schakowsky (IL-09), a Chief Deputy Whip and Ranking Member on the Innovation, Data, and Commerce Subcommittee of the Energy and Commerce Committee, led 32 of her colleagues in reintroducing the bipartisan Medical Device Nonvisual Accessibility Act (H.R. 4853). This bill would ensure that home-use medical devices are accessible to blind and low vision Americans across the country.

The Medical Device Nonvisual Accessibility Act calls on the U.S. Food and Drug Administration (FDA) to create and enforce nonvisual accessibility standards for home-use medical devices, so that devices are fully accessible to blind or low-vision persons, out of the box. The bill also requires the FDA to consult with the disability community and manufacturers throughout the process. Read the full press release here.

The President’s Budget
President Biden is set to unveil details of his fiscal year 2024 budget request as appropriations season kicks into full gear. According to the latest intel from Capitol Hill, the president's "skinny" budget — which includes messaging priorities and brief details on each agency request — will be released Thursday, with the full budget document coming out on Monday, March 13. In particular, the administration is expected to outline goals for lowering the deficit and extending the solvency of the Medicare Trust Fund, as well as increasing taxes on wealthier individuals and corporations.
Republican Response to Budget = Health Care Cuts
According to Reuters news, House Republicans are eyeing $150 billion in spending cuts that reflect a hardline drive to target education, healthcare and housing - particularly efforts to address racial inequities that conservatives classify as "woke" - as they push forward in talks on the federal debt ceiling. Here are Chairman Arrington’s remarks from Feb. 9 announcement of framework.

How would the Center for Renewing America budget plan cut Medicaid?
Read this Georgetown Center for Children and Families blog here to find out.
Read more in this this Center on Budget and Policy Priorities blog Congressional Republicans’ Plans are Likely to Cut Health Coverage.
Unwinding of PHE & Medicaid Continuous Coverage
Georgetown CCF: 50 State Tracker of Unwinding Plans
Georgetown Center for Children and Families has been updating their 50-state tracker with new information, including revised state unwinding plans and state renewal reports that were submitted to CMS.
  • All states have posted information for enrollees about the need to update their contact information, and almost all states (48) have a set of frequently asked questions on the unwinding.
  • Most states (42) also have communications materials or a toolkit, which is especially critical in the current period before unwinding begins, to help inform enrollees about forthcoming changes to Medicaid and potential actions they may have to take to maintain coverage.
  • While only a handful of states have committed to publicly posting key unwinding data in their public-facing documents, there has been improvement from the beginning of our tracking, when only four states indicated plans to do so.
  • Nearly all states (44) now have unwinding plans posted compared to only 19 states when we launched the tracker. However, some plans have not been updated and contain old information and timelines that do not reflect the changes made by the Consolidated Appropriations Act, which added new guardrails and set a date to begin winding down the continuous enrollment protection. To signal which plans are older versions, the tracker indicates plans that have not been updated with the notation “pre-CAA.”
To locate the tracker and read a Say Ahhh blog, click here.

NAMD: Framework for Unwinding
The National Association of Medicaid Directors has laid out a framework that outlines phases of the unwinding. Medicaid’s partners, including policymakers, health plans, providers, community-based organizations and others, will play a critical role in the effort to redetermine eligibility for all 90 million people on the program. NAMD’s framework will help Medicaid’s partners anticipate the arc of this effort. The framework breaks down the unwinding into three phases: forming and storming, implementation and course correction, and understanding the new normal. Read more here.   

State Health and Value Strategies (SHVS): Checklist of Actions
The long-expected return to Medicaid eligibility re-determinations and renewals, referred to as the “Medicaid unwinding,” has begun. Over the next 14 months, Medicaid agencies must assess the eligibility of over 90 million enrollees, roughly 18 million of whom will be terminated from Medicaid or the Children’s Health Insurance Program (CHIP). A good many of these individuals will be eligible for either employer-sponsored insurance or a subsidized plan on the health insurance Marketplaces.

This SHVS expert perspective provides a checklist of actions state-based marketplaces (SBMs) and state insurance departments (DOIs) can take, if they haven’t already, to reduce gaps in coverage and minimize disruptions in care. Many are designed to be temporary and will be critical to helping people navigate an unprecedented period of disruption. Other actions involve policies or operational improvements that could reap long-term benefits by mitigating risks inherent in Medicaid-Marketplace “churn.” You can find the full article here.

The recorded session of Resources for Navigators and Assisters: A Guide for Medicaid Unwinding Transitions to Private Health Insurance, hosted by the Georgetown University Center on Health Insurance Reforms (CHIR) and Georgetown University Center for Children and Families (CCF) is available here, and you can access the webinar slides here.

Kaiser Family Foundation: New Medicaid and Continuous Coverage Data
A new KFF analysis estimates that enrollment in Medicaid and the Children’s Health Insurance Program (CHIP) will have grown by 23.3 million enrollees, to nearly 95 million, by the end of March. That is when the federal continuous enrollment provision expires, and states can resume disenrollments, which have been paused since February 2020. Millions of beneficiaries are expected to be disenrolled over the next year, and the new estimates illustrate the extent to which enrollment could decline and who will be most affected. Over half of the 23.3 million enrollment increase is among low-income adults under age 65 (56%), and nearly one-third is among children. It is expected that the groups that experienced the most growth due to the continuous enrollment provision—ACA expansion adults, other adults, and children—will see the largest enrollment declines.
From the Administration
HHS: Responding to Growing Need for Enforcement
The U.S. Department of Health and Human Services, through the Office for Civil Rights (OCR), announced the formation of a new Enforcement Division, Policy Division, and Strategic Planning Division. As HHS’s law enforcement agency, OCR enforces 55 civil rights, conscience and privacy statutes— including the Health Insurance Portability and Accountability Act of 1966 (HIPAA) and the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009— investigates complaints, conducts compliance reviews, develops policy, promulgates regulations, provides technical assistance, and educates the public about federal civil rights, privacy, and conscience laws.

OCR will rename the Health Information Privacy Division (HIP) to the Health Information Privacy, Data, and Cybersecurity Division (HIPDC) to be more reflective of their work and role in cybersecurity. For example, breaches of unsecured protected health information (PHI), including electronic PHI, reported to OCR as affecting 500 or more individuals (large breaches), increased from 663 large breaches in 2020 to 714 large breaches in 2021. This trend is continuing and to date, hacking accounts for 80 percent of the large breaches OCR has received. HIPDC will continue to meet the growing demands to address health information privacy and cyber security concerns.

Read the full news release here.
Other CYSHCN Policy-Related Materials of Interest
UCP and ANCOR: 2023 The Case for Inclusion
The Case for Inclusion 2023 report, written by United Cerebral Palsy (UCP) and American Network of Community Resources and Options (ANCOR) offers new data assessing how well state programs are supporting people with intellectual and developmental disabilities, plus a policy blueprint with concrete actions lawmakers at all levels of government can take to strengthen access to home- and community-based services. Read the report.

PHI: Resource Guide Direct Care Workforce State Advocacy
Realizing the importance of fostering policy momentum for direct care workers across the United States, PHI National, an advocacy organization dedicated to quality care through quality jobs, has created a practical resource guide for the direct care workforce for state-level advocates. The resource guide will help state advocates nurture policies that allow direct care workers to thrive and provide access to the quality services and supports to those in need. The guide offers strategies, steps, and key resources learned from PHI’s Essential Jobs, Essential Care initiative to help stakeholders strengthen the direct care workforce. Ideas from other state advocacy experts and published resources are included in online links.

CCF Blog: Big Five MCO earnings
The 2022 earnings reports for the “Big Five”— CVS Health (Aetna), CenteneElevance Health (formerly Anthem), Molina, and United Health Group—are now in. As expected, combined Medicaid enrollment for the “Big Five” increased during 2022 by 3.3 million to 43.2 million, an increase of 8.2 percent (Table 1). If children are enrolled in “Big Five” MCOs in the same proportion as they are enrolled in Medicaid overall, these companies are stewards for over 16 million children, and, for three of the companies—Centene, Molina, and UnitedHealth Group—combined Medicaid revenues in 2022 were $181.8 billion, an increase of $23.2 billion, or 14.6 percent from 2021. You can read more on the Big Five MCOs as well as details and analysis of the growth here.

NASHP: Community Health Workers, Alternative Payment Models
Community health workers (CHWshave played a key role in states’ COVID-19 responses, and federal funding opportunities have expanded the CHW workforce through an infusion of time-limited funds. As states are seeking sustainable financing models and partnerships that offer continued support for the CHW services beyond the COVID-19 pandemic, many are exploring Medicaid reimbursement models. 

Existing approaches include submitting Medicaid state plan amendments (SPAs) or seeking 1115 demonstration waiver authority to reimburse CHW services. A few states are exploring alternative payment models (APMs). APMs can provide an alternative to Medicaid fee-for-service reimbursement that may help incentivize inclusion of CHWs on care teams and better anticipate the types of services CHWs offer. Additional detail about state-specific approaches can be found via NASHP’s 50-state scan or a recent issue brief detailing state approaches to authorizing CHW reimbursement using SPAs.

NASHP regularly convenes state health officials to discuss policy strategies related to financing and infrastructure for the CHW workforce. During a recent virtual meeting focused on alternative payment approaches, Maine state officials detailed how the state intends to use its Primary Care Plus (PCPlus) program to reimburse for CHW services.­

You can read the full interview here.

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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.