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Washington, DC Update 12/8/22
Legislative Updates
Talks on a year-end government funding package continue among leadership. As it currently stands, the "four corners" (meaning the democratic and Republican leaders of the committee in each house of congress) leaders of the House and Senate Appropriations Committees are stuck on topline allocations for nondefense spending. With the December 16 government funding deadline looming VERY large, another continuing resolution (CR) will likely be needed to avert a lapse in funding and provide more time to reach a deal. It is unclear if the CR will be short term to buy more time for negotiation before the end of 2022, or for longer term into the new Congress. 

Maternal, Infant, and Early Childhood Home Visiting (MIECHV): House lawmakers passed legislation that would reauthorize MIECHV program for five years. The Jackie Walorski Maternal and Child Home Visiting Reauthorization Act (H.R. 8876) cleared with strong bipartisan support in the lower chamber. It appears likely that it will pass in the Senate. In addition to the five-year extension, the legislation would implement a series of changes to the MIECHV program, including: (1) establishing a public dashboard to report program outcomes; (2) requiring activities to reduce unnecessary data collection, reporting, and other administrative requirements; and (3) allowing for virtual home visits under certain circumstances, among other provisions.

ABLE Age Adjustment Act: The ABLE Age Adjustment Act (S. 331 / H.R. 1219) was introduced by Senator Casey (D-PA) in the Senate and Representative Cárdenas (D-CA) and Representative McMorris-Rodgers (R-WA) in the House of Representatives. This bill will increase the age eligibility for ABLE accounts from 26 to 46.

On June 22nd, the Senate Finance Committee marked-up the Enhancing American Retirement Now Act (EARN Act), which is a part of the larger retirement reform bill (SECURE 2.0). The ABLE Age Adjustment Act was included in the EARN Act as part of the mark-up. ABLE accounts are tax-free savings accounts for people with disabilities to save money, while not disqualifying them from federal benefits like Supplemental Security Income or Medicaid.

AACENT Act: Recently, Senator Casey (D-PA), along with six other Democratic Senators, introduced the Augmentative and Alternative Communications Centers to Establish National Training (AACENT) Act (S. 2).  This bill awards grants to three different resource centers around the country to promote the use and effectiveness of Augmentative and Alternative (AAC) devices. AAC devices are any tool or device used to supplement or replace speech. The bill is currently pending in the Senate Health, Education, Labor, and Pensions Committee.

DIALED Act: Last month, Senator Casey (D-PA), along with five other Democratic Senators, introduced the Data on Interactions and Accountability for Law Enforcement with Individuals with Disabilities (DIALED) Act (S. 5107). The bill establishes an advisory council of law enforcement professionals, people with disabilities, researchers, and more that will collect and analyze data on interactions between police and people with disabilities. The bill also amends the Death in Custody Reporting Act to include disability status in reports on deaths that occur while in police custody. The bill is currently pending in the Senate Health, Education, Labor, and Pensions Committee.
RSV, FLU, and Pediatric Drug/Supply Shortage
The following are some materials to use within the F2F, share with families and use with partners or in your efforts to improve child health policy at the state level.

Although the Administration has declined to declare RSV a national emergency, they have indicated that it is included in the current PHE- and therefore, to handle the surge, states can access 1135 waiver flexibilities to meet the needs. If CYSHCN in your state are affected by the shortage, consider elevating their stories in your state- or to FV Policy.
From the Administration
CDC: Guidance on Management of COVID-19 in Specific Congregate Community Settings

The Centers for Disease Control and Prevention (CDC) released a report on how congregate living settings, like nursing homes and assisted living facilities, can better manage COVID-19. The ways to mitigate risk include increasing and improving ventilation, consulting with local health departments about screenings, expanding the use of masks, enhanced cleaning protocols, and creating more physical distance when possible. There has been a slight increase in COVID-19 cases over the last few weeks, so congregate care settings must take action to protect their residents.

CMS: Ending Medicaid Coverage in the Optional COVID-19 Group

Last month, the Centers for Medicare & Medicaid Services (CMS) released a new resource for states to use as they prepare for the eventual end of the COVID-19 public health emergency (PHE).

During the PHE, some states expanded access to Medicaid coverage through an optional COVID-19 eligibility group to ensure people who would otherwise be uninsured could access critical COVID-related services. When the PHE ends, this special eligibility will end as well. States will need to redetermine eligibility for those beneficiaries to determine if they’re eligible for Medicaid on another basis. This resource provides states with strategies for doing so, along with advice on planning for unwinding following the PHE.

In a March letter to state health officials, CMS provided states flexibility to prioritize work for certain populations and distribute renewals across the unwinding period. That letter recommends that states initiate no more than 1/9 of their total caseload of Medicaid and CHIP renewals in a given month during the unwinding period.

However, because coverage for the optional COVID-19 group will end as of the last day of the PHE, CMS has advised states in this new resource that they do not need to include optional COVID-19 group beneficiaries in their total caseload for purposes of ensuring they are initiating renewals for no more than 1/9 of their total Medicaid and CHIP caseload in a given month.

States also do not need to include the optional COVID-19 group in their baseline and monthly data eligibility and enrollment unwinding data reports. CMS will track optional COVID-19 group enrollment numbers and application processing data through existing CMS data collection efforts.

LTSS: No Wrong Door

No Wrong Door (NWD) is a system designed to coordinate disparate Long Term Support and Service (LTSS) offered through multiple state and local agencies and organizations, enabling individuals to access information through a coordinated point of entry and obtain support in making informed long-term choices. Individuals searching for information on LTSS options, such as personal care, nutrition, and transportation, may find the process intimidating and confusing. NWD systems of access to LTSS are intended to help individuals and caregivers of all ages, abilities, and income levels to learn about and access LTSS. For more information on NWD and to figure out how your F2F can become involved, you can find the report HERE.
State Policy of Interest to All CYSHCN
New York: Survey Needs of State Workers who are Unpaid Family Caregivers

Governor Kathy Hochul announced an initiative to raise awareness of unpaid working caregivers and the statewide resources available to help them. To gain a greater understanding of the issues facing working caregivers, Governor Hochul also urged state workers to complete a survey on their experiences balancing their jobs with caregiving tasks and encouraged private employers to do the same. To read more and consider how to raise this issue in your state, check out this information.

State Governors: Wages of the Direct Care Workforce and Medicaid Policies
Despite the importance of the direct care workforce in the US, wages remain low. States have used various strategies to improve recruitment and retention. With continued high inflation and a competitive employment market, it is important for states to evaluate current and future policies to achieve a sustainable living wage and pool of direct care workers. While it is believed that reporting and enforcement can improve accountability, there is scant public information about various direct care workforce reporting and enforcement effectiveness to aid decisions about future state actions. Recently, the National Governor’s Association released a report tackling strategies.

This report presents two categories of state strategies that address direct care worker wages:

(1) A wage/benefit increase through rate increase or supplement to rate (as a payment outside of their provider rate), including two potential implementation approaches:

  • Providers required to direct a specific percentage or dollar amount of their base payment rate to direct care worker wages (e.g., Connecticut and Kansas).
  • Providers receive an enhanced payment based on criteria, such as achieving high scores on quality metrics (e.g., Rhode Island), or a formulaic calculation (e.g., Iowa), with requirements to pass on some portion of the additional funding to direct care worker wages.

(2) A minimum wage, also referred to as a wage floor:

  • Establishing a minimum wage or wage floor for all direct care workers (e.g., Florida) or a specific category of direct care workers (e.g., Louisiana).
  • A minimum wage for direct care workers that is a specific percentage or dollar amount above the state minimum wage (e.g., New Jersey). Importantly, states may implement multiple strategies to address direct care worker wages, which may intersect in important ways. For example, Colorado and Louisiana have implemented both of the above strategies, using a provider rate increase to account for their direct care minimum wage requirements.

The report also puts forth some mechanisms for advancing wage strategies. At least 19 states are actively implementing strategies to address direct care worker wages through reporting and/or enforcement mechanisms.

To read more of the NGA report and consider how to use it in your state policy work, access the link HERE.
Other Policy-Related Materials of Interest to CYSHCN
CCF: Number of Uninsured Children
You can find the full report HERE.

Respite: Podcasts of Interest

Check out this new podcast series from ARCH, Conversations on Caregiving: Exploring Respite Care Innovations! The initial three episodes that focus on college and university-based volunteer respite programs, their contribution to workforce development, and how matching of volunteers to families can foster long-lasting relationships and life-changing experiences. Link to the Podcasts 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.