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Family Voices Washington Update

Washington, DC Update 8/24/23

Unwinding of Medicaid Continuous Coverage and the PHE

NHeLP: Questions for LEP and Disability Access to Call Centers

Call centers are often the primary way that Medicaid enrollees interact with the Medicaid agency. During the unwinding of the Medicaid continuous coverage period, people are often relying on the Medicaid call centers for answers to questions, to submit requested information, file appeals, and otherwise receive assistance. But call centers are not always helping all callers. These questions, created by the National Health Law Program, are geared to help advocates ask states about access being provided to people with limited English proficiency and those with disabilities.

Related Call Center Toolkit

Prepared by Manatt Health with funding from Robert Wood Johnson Foundation, this toolkit is designed to offer states strategies to improve call centers. If your state is challenged with call center performance and function during the unwinding, consider reading and sharing this toolkit with your state partners.

CMS: Unwinding Speaker Request Form

Want to hear directly from CMS officials and staff? Unwinding Speaking Request Form: Submit a request to have someone from HHS or CMS speak about Medicaid Unwinding at an upcoming event.


CMS: New State Resources

CMS: New Outreach and Educational Resources for Partners

CMS has released a series of resources to help partners share information about Medicaid and CHIP renewals with their communities. These resources focus on school-based and early education settings and special populations.

  • School-Based Communications Toolkit: Education and early education professionals can use this toolkit to help share information about Medicaid and CHIP renewals with families. The toolkit includes ready-to-use resources, such as letters to staff and families, social media messages, robocall scripts, and more.
  • Outreach to Families and Children on Medicaid Renewals: Community groups are encouraged to use this slide deck and talking points in their outreach to children and families about what is happening right now with Medicaid and CHIP.
  • Reaching Out to Asian American, Native Hawaiian, and Pacific Islander People about Medicaid and CHIP Renewals (English): Use this one-page handout to help reach Asian American, Native Hawaiian, and Pacific Islander people and share information about Medicaid and CHIP renewals.
  • Reaching Out to Black Americans about Medicaid and CHIP Renewals (English): Use this one- page handout to help reach Black Americans and share information about Medicaid and CHIP renewals.
  • Reaching Out to Hispanic or Latino People about Medicaid and CHIP Renewals (English and Spanish): Use this one-page handout to help reach Hispanic or Latino people and share information about Medicaid and CHIP renewals.

CBPP: Unwinding Tracker

The Center on Budget and Policy Priorities (CBPP) has a tracker that differs from those with tables updating state by state information. This tracker offers a month-by-month feed of key developments.

CMS: Key Websites to Flag

SHVS: Best Practices Reporting Unwinding Data

State Health and Value Strategies has prepared an expert perspective to guide states on best practices for states to follow when reporting unwinding data. The perspective includes maps and tables from across the United States and may be helpful in helping you understand what data is and how it should be reported so you know what to look for.

From the Administration

NIH: NOFO - Ableism

This first-of-its-kind Notice of Funding Opportunity has been posted by the National Institutes of Health. Studies funded under it would lead to understanding and mitigating health disparities experienced by those with disabilities due to ableism.

The NOFO specifically states: “The goal of this NOFO is to encourage research to understand the impact of ableism on health outcomes. Research on the underlying mechanisms by which ableism adversely influences the health of persons with disabilities (PWD), as well as developing and/or testing interventions at a community or health systems level to mitigate adverse health effects of ableism are high priority.”

Observational and Systems-Level Intervention Studies will be funded.

The NOFO background section lays out a clear history of discrimination:

The CDC and US Census Bureau estimate about 61 million adults and 3 million children in the US have some type of functional limitation or disability. There is strong evidence that people with disability experience health disparities independent of other factors such as race/ethnicity, geography, and socioeconomic status. People with disabilities (PWD) often face barriers to accessing healthcare, such as physical barriers that prevent them from entering medical facilities, inaccessible medical equipment, or a lack of transportation to medical appointments. Communication barriers also prevent effective interaction with healthcare providers. PWD are more likely to experience chronic health conditions, such as obesity, diabetes, and cardiovascular disease. Moreover, PWDs are less likely to be up-to-date on routine preventive care, such as cancer screenings and have less access to physical activity equipment and adequate nutrition.


There is a long history of overt and implicit discrimination towards PWD by the biomedical research community. Recent studies have revealed that over 80% of physicians believe people with significant disabilities experience a worse quality of life than non-disabled people and only half of physicians surveyed strongly welcomed people with disabilities into their practices. Moreover, many physicians are unaware of their legal responsibilities under the Americans with Disabilities Act to provide reasonable accommodations to PWDs. In healthcare settings, ableist beliefs often result in inequitable access to a wide array of healthcare services for PWD, whether due to physical environmental barriers, such as inaccessible medical offices and equipment, or biased medical decision-making, leading healthcare providers to limit services available to PWD, especially preventive care. Ableism may lead healthcare providers to offer less aggressive treatment options to PWD or refuse outright to provide certain types of medical care. During the COVID-19 pandemic, the US HHS Office of Civil Rights issued a bulletin reaffirming that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities...” This bulletin was issued following reports that some states and community hospital-based triage protocols, particularly the allocation of ventilators, were discriminatory towards PWD.  


Ableism is often an extension to the medical model of disability, – which views a person’s impairment is a problem to be fixed and any loss of function is attributed to the individual. In this context, disability may also be viewed as a failure of medicine and a trait to be eliminated. This NOFO encourages the use of the social model of disability. In this framework, disability is a consequence of environmental, social, and attitudinal barriers that may prevent people from fully participating in society, including receiving health care.


To further examine the impact of ableism on the health of PWD, NIH hosted a two-day virtual workshop in April 2023 titled Ableism in Medicine and Clinical Research. The workshop had two goals: 1) To raise awareness of the concept of ableism and 2) To identify research gaps and opportunities to understand and mitigate the health impacts of ableism on disabled people. The workshops were recorded and are available for viewing on the NIH videocast: https://videocast.nih.gov/watch=49317 and https://videocast.nih.gov/watch=49319.


ASPE Report: Relevant Outcomes for Patient-Centered Outcomes Research.

A new report from the Office of the Assistant Secretary for Planning and Evaluation (ASPE) identifies individual-level measures for conducting patient-centered outcomes research (PCOR) relevant to adults with disabilities, aged 18–64 years. The work identifies six broad outcome domains relevant to PCOR for this population from prior research, including:

(1) social and community engagement;

(2) choice and control;

(3) employment and self-sufficiency;

(4) privacy, rights, and human security;

(5) health-related social needs; and

(6) health and wellbeing.

Additionally, it identifies 32 sources of measures across the domains that include standardized tools/instruments, routinely fielded surveys, and administrative datasets.

ACL Funded Project: MERGE

Merge is the Kentucky Mental Health, Intellectual and Developmental Disabilities Training initiative. Merge is a five-year initiative funded by the Administration for Community Living (ACL) to improve services for individuals with co-occurring mental health conditions and intellectual and developmental disabilities.


The MERGE Community of Practice on Mental Health and Intellectual and Developmental Disabilities aims to bring together mental health professionals, agencies, medical providers, community mental health centers, direct service providers, LEND trainees, families, and individuals with MHIDD to strengthen mental health services and supports. 


  • September 12th, 2:00 PM (ET)/1:00 PM (CT) - Merge Webinar Series
  • October 10th, 2:00 PM (ET)/1:00 PM (CT) - Welcome! Planning our COP
  • November 14th, 2:00 PM (ET)/1:00 PM (CT) - Sharing of promising practices and innovative ideas
  • December - No Meeting
  • January 9th at 2:00 PM (ET)/1:00 PM (CT) - "Ask the Expert" Session
  • February 7th, 1:00 PM (ET)/12:00 PM (CT) - Merge Webinar Series: Health Literacy
  • February 13th, 2:00 PM (ET)/1:00 PM (CT) - Webinar Debriefing and Discussion

Email Elizabeth Kries at [email protected] for more information or to join the COP.

Accessible Flyer for the September 12th Webinar

Webinar Registration Link


CMS: Upcoming Virtual Conference

Registration is now open for the 2023 CMS Conference on Optimizing Healthcare Delivery to Improve Patient Lives, happening November 15 from 9 AM – 4 PM ET.

Register here.

Details about the agenda will be released as the event nears. This virtual conference will convene leadership from federal government, health provider organizations, and the patient advocacy community to focus on opportunities across the healthcare enterprise to reduce administrative burden, strengthen access to quality care, and to make it easier for clinicians to provide that care.

Other CYSHCN Policy-Related Materials

The Unforgotten Families: Family CNA/HHA Model and Legislative Update Webinar

The Unforgotten Families, an advocacy organization connected to Team Select Healthcare, to discuss legislative updates nationwide for the Family CNA/HHA (Parent Caregiver) Model. The webinar will occur on September 20, 2023, at 11 am PST.

Register here.

A large part of this webinar will be a Q & A session for families to get their questions answered about this model. Please feel free to share this with others in your community.

Manatt Health: Medicaid and School-Based Settings

In a new issue brief, Manatt Health summarizes the Centers for Medicare & Medicaid Services’ (CMS) new guidance on Medicaid and Children’s Health Insurance Program (CHIP) services in school-based settings and highlights implications for state agencies and local partners. The brief, summarized in this newsletter article, helps demystify reimbursement and funding opportunities for school-based services (SBS) and supports providers, advocates and anyone else with an interest in SBS.

Click here to download a free copy of the full issue brief.

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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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