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Washington, DC Update 12/6/22
Legislative Updates
This week preventing a strike of railway workers is demanding the attention of Congress but rest assured legislators have not lost sight of the December 16th deadline for the budget. Will there be an end of the year omnibus bill that sets the budget? Will be robust and include child health priorities such as mental health, permanent CHIP or continuous eligibility? Or will it be a bit skinny and just do the minimum to pass or will they “punt” and simply do a continuing resolution until 2023 so the new Congress can determine the budget? Raise your voices to your members of Congress to let them know what is most important to you: budget package now inclusive of additional child health funding (and maybe F2F funding?) or punt to next year.
From the Administration
HHS: Meaningful Access for People with LEP
The Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services is pleased to announce that the Maricopa Superior Court (MSC) in Maricopa County, the largest county in Arizona, has agreed to take a number of action steps to ensure that individuals with limited English proficiency (LEP) are provided meaningful access to justice in its court proceedings and operations, programs and activities.

OCR initiated a compliance review of MSC after receiving complaints alleging that MSC may have failed to provide LEP individuals involved in child welfare dependency and neglect proceedings with language services. It is a violation of Title VI of the Civil Rights Act of 1964 for recipients of federal financial assistance to fail to take reasonable steps to provide meaningful access to people whose primary language is not English. Read more about the investigation and resulting actions HERE.

HHS is taking steps to improve meaningful communication with LEP individuals by relaunching its Language Access Steering Committee (Steering Committee) to support HHS’s implementation of language access obligations under President Joe Biden’s recent Executive Orders (EOs), as well as similar obligations under the HHS Equity Action Plan - PDF. As part of this Steering Committee, all HHS agencies will reassess and update their language access plans to ensure that LEP persons have meaningful access to HHS-administered health and human services programs and activities.

OCR offers resources and best practices to help organizations take reasonable steps to make their programs, services, and activities accessible by eligible persons with limited English proficiency:  https://www.hhs.gov/civil-rights/for-individuals/special-topics/limited-english-proficiency/index.html.

NOTE: Family Voices was recently awarded a grant entitled PEALS: Promoting Equitable Access to Language Services for CYSHCN by the HHS Office of Minority Health. Read a brief overview HERE and be on the lookout for materials!

SAMHSA: Guidelines Child/Youth Behavioral Health Crisis Care
As of July 2022, people in every state, tribal nation, and U.S. territory can access the Suicide and Crisis Lifeline network by calling or texting a simple three-digit number, 988. SAMHSA aims to provide as much support as possible to facilitate the development of a spectrum of services that are effective in addressing the needs of individuals in crisis, including our nation’s youth. SAMHSA’s National Guidelines for Child and Youth Behavioral Health Crisis Care describes a framework that states and localities across America can consider as they develop or expand their crisis safety net for youth and families. Ultimately, SAMHSA envisions 988 as part of a robust crisis response system that is as widely recognized and understood as 911. This document captures recommendations from an expert children’s crisis continuum workgroup, best practices identified in the research, and learnings from pioneering children’s crisis response programs. It is not the final word—it is a beginning.

HHS: Long COVID Report and Support
A new report released by the U.S. Department of Health and Human Services (HHS) highlights patients’ experience of Long COVID to better understand its complexities and drive creative responses by government leaders, clinicians, patient advocates and others.

The Health+ Long COVID Report builds on the President’s Memorandum on Addressing the Long-Term Effects of COVID-⁠19 and the two previously issued HHS Long COVID reports. The report was commissioned by HHS and produced by Coforma, an independent third-party design and research agency. It provides recommendations on how to deliver high-quality care, and relevant and intentional resources and supports to individuals and families impacted by Long COVID.

Last week, the Administration sent a $750 million-dollar supplemental funding request to Congress to support Long COVID research and treatment. This funding request would support HHS and their continued work on Long COVID, providers who serve patients with Long COVID and its associated conditions, and community-based organizations that assist with case management and provide other essential services and supports. By developing a wrap-around response this funding will assist in answering the report’s call to action.

CMCS: Health Home Core Set
Each year, the Medicaid Health Home Core Set of quality measures undergoes a Workgroup review. The 2023 Health Home Core Set Annual Review Workgroup was charged with reviewing the measures included in the 2022 Health Home Core Set, identifying gap areas, and recommending changes to improve the 2023 Health Home Core Set. Recommendations for Improving the Medicaid Health Home Core Set of Health Care Quality Measures: Summary of a Workgroup Review of the 2023 Health Home Core Set, has been released. The report is available at https://mathematica.org/features/HHCoreSetReview.

ACL: Getting Services You Need from HCBS Waivers
The Home- and Community-Based Services (HCBS) Settings Rule can improve community-based services and supports for people with disabilities for decades to come. This webinar hosted by ACL will provide insight into one of the main strategies stakeholders can use to get the promise of the Rule into real everyday life: influencing the services that are included in the waiver application. The webinar will highlight why you should pay attention to the waiver application and what is in an application, with a focus on appendix C – Services. It will also look at what states have to put into the application and highlight best practices for commenting on your state’s waiver application.

Wednesday, December 14, 2022 from 12:30PM ET - 2:00 PM ET. Register HERE. Live captioning will be provided. A video replay and transcript will be made available following the event.
Other Policy-Related Materials of Interest to CYSHCN
Blog: Community Care Hubs
A new Health Affairs blog highlights the value of improving health and well-being through establishing community care hubs – community-focused entities supporting a network of community-based organizations providing services that address individuals’ health-related social needs. The blog, co-authored by leaders across the U.S. Department of Health and Human Services, complements ACL’s investments to develop and scale community care hubs across the country. These investments include a recently launched National Learning Community, as well as plans to administer grants to support community care hub infrastructure. 

Additional resources on community care hubs can be found on the Partnership to Align Social Care website, including a playbook for state Medicaid agencies on working with hubs to address social drivers of health, and an upcoming webinar on leveraging multi-payer partnerships with community care hubs. ACL participates as a federal liaison to the Partnership. 

NOTE for F2Fs: Check out the National Learning Community link above. Is there a Community Care Hub in your state for people with disabilities? Can you join to bring the voice of children with disabilities and their families?

Blog: Medicaid and Kids with Complex Behavioral Health Needs
With an uptick in children and youth requiring specialized inpatient psychiatric care, this blog from the National Association of Medicaid Directors highlights state Medicaid strategies to support children who have complex co-occurring chronic behavioral health conditions.

Report/Recording: Addressing Health-Related Social Needs through Medicaid Managed Care
On Wednesday, November 9 State Health and Value Strategies (SHVS) and the Health Foundation of South Florida (HFSF) hosted a webinar that reviewed examples of state approaches to address enrollees’ health-related social needs that do not require an 1115 waiver. During the webinar, experts from Bailit Health reviewed a new SHVS/HFSF resource, Addressing Health-Related Social Needs Through Medicaid Managed Care, described approaches to require and/or incentivize Medicaid plans to address health-related social needs, and facilitated a discussion with state Medicaid officials. You can find the webinar recording and resources HERE.

Blog: Changing the Care Conversation
Consider reading this blog by Community Catalyst that profiles Nancy Giurato. Nancy shares her personal story and work as a family caregiving advocate. It also includes links to Changing the Care Conversation Project and other materials.

Report: Racial Equity in Health Technology Assessment

Sick Cells and the Innovation and Value Initiative published a report discussing the potential implications of flawed or incomplete analyses for health and racial equity in future decision-making and identifies recommendations for improvements in key focus areas to advance racial equity in health technology assessment.

The report states, "When decisions affecting coverage and access to potentially beneficial therapies are based on their estimated value, several vital questions arise, including, 'Value for whom?' and whether clinical and other data inputs represent real-world patient communities and lived experience. These decisions bear significant consequences for equity and disparities in outcomes. As the use of HTA gains increasing traction in the U.S., it is especially important to understand and explore how racism is built into the current structures of the HTA process, and how that widens or contributes to existing health and racial inequalities.”

Sick Cells is a national advocacy nonprofit for sickle cell disease founded on February 28, 2017, by siblings Ashley and Marqus Valentine. Sick Cells’ mission is to elevate the voices of the SCD community and their stories of resilience. In highlighting the grave disparities this community faces, they hope to influence decision‐makers and propel change at all levels. The Innovation and Value Initiative (IVI) is a 501(c)3 nonprofit organization whose mission is advancing the science of value assessment in healthcare.

NOTE: Family Voices' FamU Anti-Racism Toolkit offers resources and action that aligns with this report and may help you start similar conversations in your state.

NAMD Advocates Leadership Summit
The National Alliance of Melanin Disabled Advocates (NAMD Advocates) is hosting its Leadership Summit on December 12. ‘Our Presence is Our Power’ is a one-day virtual conference made for leaders of color who are committed to creating space for the routinely underserved. This year’s summit will celebrate solidarity and share knowledge to empower our people to thrive. For more information and to register, visit this link.

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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.