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Family Voices Washington Update

Washington, DC Update 11/9/23

Legislative Update

House and Senate lawmakers have just 10 days to avoid a shutdown, but no plan has emerged. Republican leaders are meeting this week to think about and discuss options such as: 1) another continuing resolution (CR) that extends the current temporary funding until the middle of January; 2) a "laddered" CR that would extend individual agencies for different periods of time; and 3) a compromise CR hammered out between House and Senate leadership.

12 Months Continuous Eligibility

The Stabilize Medicaid and CHIP Coverage Act (H.R. 5434/S. 3138), sponsored by Senators Dingell (D-MI) and Brown (D-OH) would provide 12 months of continuous enrollment for American adults who are eligible for these programs. This legislation builds on the Consolidated Appropriations Act of 2023, which provides 12-month continuous enrollment for all children receiving care in Medicaid/CHIP and allows states the option to provide 12 months of postpartum coverage.

By providing stable coverage, the legislation will relieve excessive burden on states, providers, hospitals, and health plans that work on eligibility screening and determination. Most importantly, it will reduce burdens on Medicaid and CHIP enrollees and help keep them healthy.

Bi-Partisan Mental Health Discussion Draft

Senate Finance Committee Chair Ron Wyden, D-Ore., and Ranking Member Mike Crapo, R-Idaho, released a discussion draft including policies that could expand and preserve mental health care under Medicaid and Medicare. Many of the provisions are focused on Medicare and elderly populations; however, some of the proposals that affect mental health access for children include:

  • Improving mental health services and substance use disorder care for youth enrolled in Medicaid and CHIP. 
  • Improving integration of mental health services and substance use disorder care with primary care for youth enrolled in Medicaid and CHIP.
  • Extending essential Medicaid and Medicare provisions that will expire this year to avert harmful Medicaid cuts to safety-net hospitals and protect rural providers and patients, among others.

The Finance Committee will mark up the discussion draft this week.

Unwinding of Medicaid Continuous Coverage and the PHE

This KFF Health News article takes a deep dive into the How the Unwinding is impacting children and families.

Medicaid Enrollment is Down by Five Million, Including Two Million Children

A new blog from Georgetown CCF digs into the latest Unwinding data published by CMS.

Understanding Medicaid Ex Parte Renewals During the Unwinding: this policy watch from KFF (Kaiser Family Foundation) explains what ex parte renewals are, examines variation in ex parte renewal rates across states, and discusses current issues as well as actions states are taking to increase ex parte rates. 

From the Administration

HHS: Telehealth Resources from the Office of Civil Rights

Last month the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) released two new resources for patients to increase understanding around protecting health information when receiving health care services via telehealth.

Telehealth Security and Privacy Tips for Patients includes basic tips about how to safely approach a telehealth appointment and cross-references additional resources such as HHS’ Protecting the Privacy and Security of Your Health Information when using personal devices, which highlights how HIPAA only applies to information maintained and transmitted by providers, not information stored on your own devices. The general electronic information guidance includes instructions on how to turn off access to location services and app activity tracking on patient devices as well.

Telehealth Resource for Providers about Privacy and Security references some of the resources OCR has recently put forth for providers related to telehealth and compliance with the Health Insurance Portability and Accountability Act of 1996 (HIPAA) (see the HHS HIPAA and Telehealth website). The provider guidance document is in response to recent recommendations from the Government Accounting Office (GAO) that more education should be developed specific to helping providers explain privacy and security issues to patients. In addition, OCR reminds providers of civil rights requirements related to ensuring equally effective communication with all individuals, including those with disabilities, such as offering language assistance services and provides tips about how to do this.

CMS: Tribal Protections in Medicaid and CHIP Managed Care Oversight Toolkit

As part of its commitment to advancing high-quality, person-centered care in Medicaid and the Children’s Health Insurance Program (CHIP), CMS released the Tribal Protections in Medicaid and CHIP Managed Care Oversight toolkit. The toolkit provides resources for states, managed care plans, and Indian Health Care Providers (IHCP) to maximize the benefits of Medicaid and CHIP managed care for American Indian and Alaska Native enrollees and the IHCPs consistent with the statutory and regulatory Indian managed care protections. This is part of CMS's efforts to advance health equity, expand coverage, and improve health outcomes for individuals who rely on Medicaid and CHIP.

CBO: Exploring the Effects of Medicaid During Childhood on the Economy and the Budget

A new analysis from the Congressional Budget Office (CBO) examines the short- and long-term fiscal effects of Medicaid spending on children by comparing block grant proposals with continuous eligibility policies. 

CMS: Supporting Adults with Intellectual and Developmental Disabilities and Their Aging Caregivers

To assist state Medicaid and partner agencies to address the needs of adults with I/DD living with and supported by aging parents and other caregivers, CMS developed resources that highlight innovative practices, person- and family-centered systems of support, and information on planning for the future. These resources also summarize state policies and practices to help to implement person-centered planning, and assess and address the needs of caregivers of adults with I/DD.


HHS: Take Action for Adolescents

HHS issued Take Action for Adolescents: A Call to Action for Adolescent Health and Well-Being, a new effort to promote collaboration and spur action to improve the health and well-being of adolescents across the U.S.

Take Action for Adolescents outlines a vision, key principles, eight goals, and a set of initial action steps. It is research-based and was developed with extensive input from adult and youth allies and partners, including nationally recognized adolescent health experts. It is accompanied by a Take Action Toolkit with tips and resources to spur collaboration in states and communities.

Take Action for Adolescent’s eight goals are: 1) Eliminate disparities to advance health equity, 2) Increase youth agency and youth engagement, 3) Ensure access to safe and supportive environments, 4) Increase coordination and collaboration within and across systems, 5) Expand access to health care and human services, 6) Strengthen training and support for caring adults, 7) Improve health information and health literacy, and 8) Support, translate, and disseminate research.

The action steps are aligned with each goal and designated for policy makers, health care and human service providers and organizations, other youth-serving professionals and organizations, parents and other caregivers, and researchers.

The Office of Population Affairs’ Take Action for Adolescents webpage features resources that are easy to download and share.

CMS issues guidance on continuous eligibility for kids in Medicaid and CHIP 

Per the Consolidated Appropriations Act of 2023, all states will need to implement 12-month continuous eligibility for kids in Medicaid and CHIP by January 1, 2024. This means that kids up to age 19 who are found eligible for Medicaid or CHIP will be entitled to 12 months of coverage, even if their household income increases or they experience most other changes in circumstances. For more information, review the letter to State Health Officials or this blog from Georgetown CCF.

Other CYSHCN Policy-Related Materials

AAP Medicaid Policy Statement

Last month, the AAP unveiled its groundbreaking policy statement, titled "Medicaid and the Children's Health Insurance Program: Optimization to Promote Equity in Child and Young Adult Health." This statement recommends foundational changes in Medicaid and CHIP that can improve child health, achieve greater equity in health and health care, dismantle structural racism within the programs, and reduce major state-by-state variations.

The AAP's recommendations include:

  • Automatic enrollment for all newborns to ensure healthcare access during critical periods, with the option to opt out.
  • Universal eligibility for children up to age 26 who lack other health insurance.
  • Increased federal funding for Medicaid/CHIP programs, especially for direct patient care, reducing state variations.
  • A federal minimum rate schedule for payments to ensure fairness.

In addition to proposed foundational changes in the Medicaid and CHIP program structure, the statement indicates stepwise, coordinated actions that federal legislation or rulemaking from CMS can accomplish in the shorter term, such as: expanding eligibility and enrollment, making EPSDT the standard for both Medicaid/CHIP, increased oversight from CMS to reduce state-by-state variation, and ensuring adequate payment for providers.

Read the full policy statement. Other coverage of the policy statement can be found in these links:


Manatt Health: Leveraging Medicaid to Support Complex Behavioral Health Needs

In the new report for the Commonwealth Fund, Manatt Health and its co-authors have developed an actionable framework and strategies for how state-level policymakers can use Medicaid and the Children’s Health Insurance Program (CHIP) to respond to the behavioral health crisis among children and youth living with complex needs—those who are stuck in emergency departments for days on end, cycling in and out of psychiatric hospitals, contemplating and sometimes attempting or completing suicide, or struggling to remain in school or to find and keep a job. The framework and strategies are rooted in a family- and community-based approach that recognizes children and youth do best when treated in the context of their families (broadly defined) and communities, as well as when interventions build on their strengths and maximize their choices and autonomy.

HA Article: Patient-Centered Listening Sessions

A recent Health Affairs article offers questions and concrete strategy suggestions to CMS as they begin to operationalize listening sessions for the drug price negotiation program under the Inflation Reduction Act. While this article is specific to drug plan negotiation and not specific to children, the questions and strategies to carry out patient-focused listening sessions are helpful in all areas of healthcare.

ARC and AAPD: Disability Discrimination Story Collection by 11.12.23

Both the Arc and AAPD (American Association of People with Disabilities) are looking for patient stories to share with policymakers as the Department of Health and Human Services (HHS) looks to update existing rules that address discrimination against people with disabilities in government-funded health care programs. Comments are due on Monday November12th. Click the links to share your story with The Arc or share your story with AAPD.

Framework to Understand Economic Impacts on Patients and Caregivers. The Innovation and Value Initiative (IVI) and Academy Health recently partnered, through a project supported by a Eugene Washington PCORI Engagement Award, to develop a framework for researchers that captures the full range of economic impacts on patients and caregivers. The project included two parts: (1) conducting an environmental scan to identify existing methods for defining economic impacts in health-related research; and (2) iterative stakeholder engagement to develop a draft framework. "This framework offers a powerful new tool for researchers to comprehensively co-create with patients a more holistic approach to understanding the patient and caregiver experience. Applying the framework can enhance how we generate evidence to better meet the needs of patients, providers, and policymakers."

National Alliance on Caregiving: Supporting the Mental Health of Family Caregivers

This issue of the Social Innovations Spotlight Series examines the mental health impacts of family caregiving, and policy opportunities to increase mental supports for the caregiver community. Caring for the Carers: A Spotlight Brief for Supporting the Mental Health of Family Caregivers outlines recommendations to improve the mental health of family caregivers, expand dialogue, and promote policies that can address the negative mental health impacts often faced by family caregivers. Nearly 60% of organizations that support unpaid caregivers cited a lack of respite care as a top concern of caregivers. It was noted that lack of information affects the ability of African American caregivers to receive respite services. There is a need for more and better access to federally- and community-based programs to support African American caregivers and other caregivers of color.

Grand families and Kinship Support Network: Unaccompanied Immigrant Children

This resource documents the record numbers of unaccompanied immigrant children (UC) who have crossed into the United States, chronicles what happens to them when they arrive, and describes the importance of kin for these children. The report includes steps to explore how kinship and other programs can support kinship families of unaccompanied immigrant children. Read the tipsheet.

Workforce development: Meeting the growing demand for I/DD services

The state systems that support individuals with intellectual and developmental disabilities (I/DD) have reached a tipping point. Low pay rates and difficult working conditions have always made it challenging to staff programs; now the problem has been made worse by agency closings, shortages in the broader employment market, and the lingering effects of the COVID-19 pandemic. The National Association of State Directors of Developmental Disabilities (NASDDDS), Guidehouse, and WellSky compiled proven responses to the workforce shortage: Examine the best uses of American Recovery Plan Act (ARPA) funding; Create valuable certifications and other incentives; and Incorporate new efficiencies that extend your resources. Read this tip sheet for innovative approaches to help your state agency build a thriving provider network.

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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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