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Family Voices Washington Update

Washington, DC Update 10/19/23

Legislative Update

Both the Senate and House are in session this week… sort of. The House has been unable to elect a Speaker so much of their business is on hold.


Augmentative and Alternative Communication Centers to Establish National Training (AACCENT) Act: On September 27th, Senator Casey (D-PA) and Representative Dingell (D-MI-5) introduced the Augmentative and Alternative Communication Centers to Establish National Training (AACCENT) Act (S. 2904 / H.R. 5705). The bill will establish three national resource centers to help people with various disabilities get connected to augmentative and alternative communication (AAC) devices. AAC devices are any tool, technology, or service that helps people who use little to no verbal language communicate. The national resource centers will improve access to AAC devices, provide resources for AAC device users and their families, and increase the capacity and leadership skills of AAC device users. 

Read the full announcement.


International Children with Disabilities Protection Act: On September 29th, Representative LaTurner (R-KS-2) and Representative Titus (D-NV-1) introduced the International Children with Disabilities Protection Act (S. 847 / H.R. 5847). In March, the bill was introduced in the Senate by Senator Menendez (D-NJ) and Senator Moran (R-KS). The bill will establish an International Children with Disabilities Protection Program within the State Department. The program will provide grants to assist countries in setting up protection programs for people with disabilities. These protection programs will help advance inclusive policies and will teach children with disabilities and their family members about advocacy. The bill also reinforces current federal law that aims to protect children with disabilities against unnecessary institutionalization. Read the press release with links to the text of the bill.

Unwinding of Medicaid Continuous Coverage and the PHE

National Health Law Program: Medicaid Continuous Coverage Unwinding: Messaging and Outreach Resources

From the Administration

12-month Continuous Eligibility for Medicaid and CHIP

Read this great Georgetown Center for Children and Families Say Ahhh! Blog giving a breakdown of the new eligibility, which includes focus on timelines that are important for F2F/AOs to keep an eye on:


How does the effective date of 12-month continuous eligibility (CE) work for different children?"


  • New enrollees – Any child under the age of 19 who is newly enrolled on or after January 1, 2024 will have a guaranteed year of coverage from the effective date of coverage unless they meet an exception noted previously.
  • Children whose eligibility was redetermined in the prior 12 months 
  • If the state remains current on processing renewals in 2024, any child whose coverage was renewed in 2023 either before or after the unwinding is protected until their next renewal date. For example, if a state successfully renewed a child’s coverage in March 2023 via ex parte, then the child’s effective date of 12-month CE is March 2023. If the state processes the renewal in March 2024 and the child remains eligible, the child retains CE for another year starting in March 2024.
  • In the example above, if the state is delayed in processing the March 2024 renewal for any reason, the child will lose CE in March since the CE requirement is limited to 12 months. If a change in circumstances is acted on before the child’s renewal is processed, the child will NOT be protected by CE. However, during the unwinding, states have flexibility to align action on changes in circumstances with the renewal date to avoid disruptions in coverage for children.
  • For children whose coverage was not successfully renewed in 2023, these children will not be protected by CE until their eligibility has been successfully renewed after January 1, 2024.”


Want to understand and read more about 12-month Continuous Eligibility? Manatt Health has written a new Expert Perspective for State Health & Value Strategies. It does a visual breakdown of the rule in tables as well as more detailed discussion of expectations and implementation.


CMS: Comments Mental Health Parity

The Centers for Medicaid and CHIP Services announced it is seeking comments on processes for assessing compliance with Mental Health Parity and Addiction Equity in Medicaid and CHIP. Mental health parity describes the equal treatment of mental health conditions and substance use disorders in insurance plans. The request for comment lays out the important role Medicaid and CHIP play in meeting the mental health needs of individuals, including children and youth, describes current requirements and processes for assessing compliance in Medicaid and CHIP, and concludes with a list of questions for comment related to compliance processes for Medicaid and CHIP parity. Comments are due by December 4th, 2023.

If you want to understand more about this issue, consider reading these:


HHS: Agreement to Increase Access to Paxlovid

The U.S. Department of Health and Human Services (HHS), announced that HHS and Pfizer have reached an agreement that extends patient access to Paxlovid, maximizes taxpayer investment, and begins preparations for Pfizer to transition Paxlovid to the commercial market in November 2023.


Key features of today’s agreement are:

  • Protecting individuals in public programs, particularly Medicare. Individuals on Medicare, Medicaid, and those who are uninsured will continue to be able to access HHS-procured Paxlovid for free through the end of 2024 via a patient assistance program. From 2025-2028, Pfizer will continue to run a patient assistance program for individuals who are uninsured or underinsured with HHS-procured Paxlovid. In parallel, Pfizer will operate a copay assistance program for individuals with commercial insurance through 2028.
  • Ensuring no HHS-procured product is lost to expiry. Up-to-date product will be refreshed from Pfizer through 2028, ensuring that the HHS inventory of Paxlovid will not expire and will include all new formulations of Paxlovid authorized or approved for use in the U.S.
  • Creating a stockpile for future emergencies. In addition to ensuring that HHS maintains every course of Paxlovid that it has purchased, Pfizer will provide HHS with a stockpile of an additional one million treatment courses to ensure preparedness for future COVID-19 surges. 
  • Providing a smooth transition to the commercial market. HHS will ensure a smooth and predictable transition to the commercial market over the next few months while prioritizing and reserving HHS-procured treatment courses for people with Medicare and Medicaid, and for those who are uninsured. During this transition to commercial distribution, Paxlovid will remain available for ordering from HHS through December 15, 2023.


You can learn more about HHS’ COVID-19 response and preparedness at HHS.gov.

 

ACL: Apply to Join Community Care Hub National Learning Community

ACL invites community-based organizations from across the country to apply for the 2023-2024 Community Care Hub National Learning Community. Participants will gain access to vital peer support, technical assistance from national experts, and up-to-date information on resources, initiatives, and collaborations aimed at furthering the capacity of community care hubs nationwide.


The National Learning Community will launch in December 2023 and will build on the curriculum and other technical assistance of the 2022-2023 cohorts, including use of the ECHO Model® “all teach, all learn” approach and individual consulting with subject matter experts.


ACL intends to select approximately 30 organizations for participation in the National Learning Community. The projected start date is December 2023 with an estimated length of up to nine months. Visit the Community Care Hub National Learning Community Frequently Asked Questions or contact CommunityCareHubs@acl.hhs.gov with inquiries. Learn more and apply.


CMS: Improving Access to Health Care Coverage in Rural Communities with Medicaid and CHIP

Families living in rural communities face many barriers that can negatively impact their access to health care such as higher poverty rates, unemployment, and more. Getting these families enrolled in programs like Medicaid and CHIP can give children and teens a better chance at accessing the health care they need. An estimated 13.4 million children under the age of 18 live in rural areas across the United States and kids in these communities are 24 percent more likely than those in urban areas to depend on Medicaid and CHIP for health coverage. Additionally, Medicaid and CHIP cover over 300,000 American Indian and Alaska Native (AI/AN) children nationwide, many of whom reside in rural areas, including on Indian reservations, and may be more likely to rely on Medicaid and CHIP for coverage than other children. The CMS Connecting Kids to Coverage Campaign will mark National Rural Health Day this November by hosting a webinar to discuss the importance of Medicaid and CHIP in rural communities now and year-round.

Centers for Medicare & Medicaid Services staff and partners will discuss important strategies, resources, and best practices for rural community outreach and enrollment and address health equity challenges in rural communities. Speakers will also discuss the importance of partnerships, provide actionable tools, and share materials from the Campaign’s rural health initiative to support outreach.

Thursday, November 9, 2023, 2:00 p.m. – 3:00 p.m. ET - Register here.

Other CYSHCN Policy-Related Materials

Kaiser Health News: More than 1/3 of Schools Nationwide Do Not Have a Nurse

Lots of data and concern are in this article to draw attention to the rising health (physical, mental and behavioral) needs of school children, alongside the steady decline of a nurse in the building to be able to help.


NASHP: Prioritizing and Responding to the Youth Mental Health Crisis

States continue to face an urgent need to improve crisis response services for children, youth, and families due to increased youth behavioral health needs combined with strained behavioral health systems. 


Explore the resources on this page created by the National Academy for State Health Policy (NASHP) to find out how states are taking steps to improve access to crisis receiving and stabilization facilities to meet the growing needs of today’s youth.

CAHMI: A History of Promoting Family Involvement in System Change

Since 1996, the national Child and Adolescent Health Measurement Initiative (CAHMI) has worked to put families at the center of defining, measuring, and using health care performance information to drive improved services and outcomes, including a focus on CYSHCN. A new article in the Maternal and Child Health Journal highlights CAHMI’s history in shaping the field of maternal and child health and offers six ideas for enhancing the field going forward.

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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.



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