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Background

In July 2025, Congress passed the budget reconciliation act (H.R. 1), cutting federal Medicaid spending and establishing community engagement requirements for adults ages 19-64 applying for or enrolled through Medicaid expansion or minimum essential coverage under Section 1115 demonstration waivers (e.g., Wisconsin and Georgia).

Section 71119 of the law mandates states to verify work, education, training, or volunteer participation for these Medicaid enrollees while defining required exemptions and optional short‑term hardship exceptions. The statute also categorically excludes people age 65 and older, people eligible for Medicare, people eligible based on SSI, or through other mandatory pathways. These requirements are codified at 42 U.S.C. 1396a(xx) and take effect December 31, 2026.

Work requirements create administrative barriers that lead to improper terminations and disrupt access to health care. Older adults, people with disabilities and chronic health conditions, and family caregivers face heightened risk of losing Medicaid coverage because these administrative hurdles, reporting requirements, and narrow exemption processes can improperly terminate people who have fluctuating health, caregiving duties, or limited access to technology and transportation. Documentation requirements and policies based on ability to work or that overly rely on employment verification are especially likely to penalize older adults and others with intermittent work histories, chronic conditions, and/or caregiving responsibilities.

Although required statutory exemptions for people who are “medically frail” (42 U.S.C. 1396a(xx)(9)(ii)(V)) and family caregivers (1396a(xx)(9)(ii)(III)) are intended to protect these populations, in practice such exemptions frequently fail to reach the people they were meant to protect in part due to complex paperwork, narrow interpretations, and reliance on automated data checks that fail to fully capture eligible individuals.

Principles

Advocates for older adults should weigh in now and throughout the implementation process to ensure their states are taking steps to minimize coverage losses. We recommend advocating that states employ the following principles to ensure the medically frail, family caregiver, and other exemptions are properly implemented and as protective as possible for older adults, people with disabilities and chronic conditions, and family caregivers.

1. Ensure categorical exclusions from work requirements are automatic and permanent

States must ensure that individuals who are categorically excluded from work requirements under the law, such as people with Medicare dually enrolled in Medicaid and people eligible through the aged and disabled pathways, are automatically and permanently exempted. States already have the data to identify these individuals and must not impose extra paperwork or screening on these current enrollees, and should take steps to minimize confusion or unnecessary paperwork on new applicants.

2. Ensure people who can work or are employed can access exemptions

Eligibility for an exemption and employment are not mutually exclusive. Therefore, eligibility for the medically frail and family caregiver exemptions should be based on an individual’s medical conditions, functional impairments, or caregiving responsibilities rather than assessments of their work capacity or history. States should not require enrollees to prove they are not working or cannot work to qualify for an exemption, nor should evidence of recent or current employment be considered in determining exemption eligibility.

3. Ensure the medically frail exemption is not limited to strict disability criteria

The statute requires states to exempt many categories of individuals well beyond Social Security disability standards, including people with a physical, intellectual, or developmental disability that significantly impairs one or more activities of daily living, a substance use disorder, a disabling mental disorder, or a serious or complex medical condition. States must not inappropriately limit the medically frail exemption to disability and must describe the exemption in a manner that ensures older adults and other eligible individuals who do not identify as disabled understand that this exemption applies to them.

4. Make explicit that the family caregiver exemption includes caregivers for older adults

H.R. 1 uses the RAISE Family Caregivers Act definition to define caregivers as “an adult family member or other individual who has a significant relationship with, and who provides a broad range of assistance to, an individual with a chronic or other health condition, disability, or functional limitation.” States must implement this definition to ensure both paid and unpaid caregivers, including those caring for older adults and people with disabilities, are exempted.

States must not impose restrictions like requiring the person being cared for to have a diagnosed disability, or be a dependent of or related to the caregiver. Nor should states require caregivers to be providing a minimum number of weekly or monthly caregiving hours. Finally, in describing this exemption, states should utilize the RAISE definition and specifically name providing assistance to older adults so that people who are eligible, but may not identify as caregivers, understand this exemption applies to them.

5. Accept self-declaration as verification for exemptions

H.R. 1 authorizes states to accept individually reported information as verification for exemptions. States should utilize this option to determine eligibility for the family caregiver and medically frail exemptions. Allowing self-declaration is important because there is no data source to identify most caregivers. Similarly, people with serious health conditions may not have medical or other formal records, especially if they are newly applying for Medicaid and do not have access to medical care.

Additionally, such declarations are already a core aspect of Medicaid eligibility screening. For example, every state that currently covers a population subject to work requirements accepts self-declaration without additional verification for caretaker relative eligibility.[1] Employing screening forms and self-declarations reduces administrative barriers, speeds processing, and prevents unnecessary coverage disruptions.

6. Minimize administrative burden and procedural churn

H.R. 1 requires states to use an ex parte process (i.e, reviewing existing data and records) to verify compliance and mandatory exemptions and avoid requesting that individuals provide additional information whenever possible. States should utilize data such as Medicaid claims and Medicaid payment to family caregivers to identify and automatically exempt people who qualify for the medically frail and caregiver exemptions.

In addition, states should use screening tools like self-declarations to create a new data point for ex parte purposes. States should also limit the frequency of reporting and reverification to federal minimums, implement ex parte renewals of exemptions, and presume medically frail and family caregiver exemptions will continue absent evidence of change. Streamlined processes reduce paperwork, shorten processing times, and keep eligible people continuously enrolled.

7. Provide robust outreach and accessible assistance

States must conduct proactive, accessible outreach and offer multiple channels for assistance—telephone, in-person support, and varied notice formats—to help older adults, people with disabilities, and caregivers navigate changes. The unwinding of continuous Medicaid enrollment after the COVID-19 health emergency and experiences in other states that have previously implemented work requirements demonstrate that paperwork and technology barriers put older adults at risk of having their coverage improperly terminated and provide critical lessons for steps states can take to eliminate and minimize these procedural barriers. Early engagement and clear, plain-language materials can reduce erroneous disenrollments and preserve access to care.

Tools and Resources

We have created a template letter that outlines recommendations for states in implementing work requirements to maximize exemptions and mitigate coverage loss among older adults, people with disabilities, and their caregivers. We encourage advocates to customize this letter to respond to your state’s situation and your organization’s advocacy priorities. Include examples of situations and barriers your clients face to show your state officials why it is critical they take steps to minimize the additional barriers of work requirements. Feel free to cite the resources listed here to support your case. Download the template letter.

Additional Resources

We encourage you to reach out to Justice in Aging for questions or support in minimizing disruptions and protecting access to care for older adults: info@justiceinaging.org.

Endnote

  1. Every state except Mississippi and Texas accept self-declaration (also called self-attestation) without verification for one or more eligibility factors, such as parent caretaker relative status. See Medicaid eligibility verification plans by state: https://www.medicaid.gov/medicaid/eligibility/medicaidchip-eligibility-verification-plans. ↑

Template Letter

Instructions: Download and customize this letter to respond to your state’s situation and your organization’s advocacy priorities. Edit the highlighted and bracketed text and include additional examples of situations and barriers your clients face to show why it is critical your state take steps to minimize the additional barriers of work requirements.

Copy to Clipboard Download as Word (.docx)

Dear [state Medicaid director or other official], 

On behalf of [Organization(s)], we urge you to adopt the recommendations below for implementing Medicaid work requirements to minimize harm and preserve continuous access to essential [Medicaid or state program name] services for older adults, people with disabilities and chronic health conditions, caregivers, and others. We also ask that you share these recommendations and concerns with federal officials as they finalize guidance for implementation.  

[Add info about organization(s)] 

In July 2025, Congress passed the budget reconciliation act of 2025 (H.R. 1) establishing federal community engagement requirements for Medicaid expansion [or your state’s program name]  enrollees between ages 19-64. The statute mandates the state to verify work, education, training, or volunteer participation for these Medicaid enrollees and defines required exemptions and optional short‑term hardship exceptions.  

As [aging and disability] advocates, we are concerned that work requirements create administrative barriers that will lead to improper terminations and disrupted access to crucial healthcare. These burdens disproportionately impact older adults and people with disabilities who have a harder time finding work and maintaining employment due to functional limitations, changing work or caregiving responsibilities, and fluctuating health. For example, the vast majority of older adults ages 50-64 enrolled in Medicaid expansion who are retired or not working (86%) report having a health condition that prevents them from working.1 Although the statutorily required exemptions for people who are “medically frail” and for family caregivers are intended to protect these populations, in practice such exemptions frequently fail to reach or work for the people they were meant to protect in part due to complex paperwork, narrow interpretations, and reliance on automated data checks that fail to fully capture people who are eligible. 

We have provided recommendations and further considerations for implementing exemptions to minimize disruptions in coverage and access to care for older adults, people with disabilities, and family caregivers due to work requirements.  

Automatically exclude people with Medicare and people eligible through the aged and disabled pathways from work requirements. 

The state must ensure that individuals who are categorically excluded from work requirements under the law are automatically and permanently exempted, including people age 65 and older, people dually enrolled in Medicare and Medicaid, and people of any age eligible through disability and other mandatory pathways. The state should utilize existing data to identify these current enrollees without subjecting them to additional paperwork and ensure its eligibility systems are set to automatically screen out new applicants. We urge the state to take steps to minimize confusion and clearly communicate to new applicants whether or not they are subject to work requirements, particularly if they are filling out paper applications.  

Do not impose additional restrictions on exemptions not required by the statute.  

The state should determine eligibility for the medically frail and family caregiver exemptions based on an individual’s reported medical conditions, diagnoses, functional impairments, or caregiving responsibilities, and not require proof of unemployment or inability to work. Evidence of recent or current employment should not be considered in determining exemption eligibility, as many people who qualify as medically frail or family caregivers may also be employed. Ensuring they have the exemption in place will help protect them from coverage loss should their employment status change, which is particularly common for people with disabilities, serious health conditions, and caregiving responsibilities. 

Under the medically frail exemption, the statute requires the state to exempt many categories of individuals well beyond Social Security disability standards, including people with a physical, intellectual or developmental disability that significantly impairs one or more activities of daily living, a substance use disorder, a disabling mental disorder, or a serious or complex medical condition. Therefore, the state must not limit the medically frail exemption to Social Security disability or similarly strict standards and ensure its eligibility criteria are inclusive of people described in the statute. 

H.R. 1 uses the RAISE Family Caregivers Act definition to define caregivers as “an adult family member or other individual who has a significant relationship with, and who provides a broad range of assistance to, an individual with a chronic or other health condition, disability, or functional limitation.” All such family caregivers, including caregivers for older adults and others who may not identify as disabled, must be exempted. The state must not impose restrictions like requiring the person being cared for to have a diagnosed disability, or be a dependent of or related to the caregiver. Nor should the state require caregivers to be providing a minimum number of weekly or monthly caregiving hours. 

Real world application [insert your own example or customize this one]: Robin, age 49, is a caregiver for her father who has several health conditions and lives by himself in the house Robin grew up in. Robin lives about 20 miles away and visits her father several days a week to help him with groceries, meal preparation, and to take him to doctors’ appointments. Recently, after her father fell and broke his leg, Robin made the difficult decision to transition to part time at the retail store where she works so that she can spend more time helping her father. Robin lost her health coverage and is applying for Medicaid. 

Here, Robin meets the RAISE Act definition for the caregiver exemption and the state should approve her Medicaid application based on her declaration in her application that she is a caregiver to her father who relies on her support. The state should not require her to submit any documentation of her caregiving duties when she applies for or renews Medicaid coverage. 

Utilize screening questions and ex parte verification to minimize administrative burden and procedural churn.  

To reduce administrative barriers for both Medicaid enrollees and the state, screening questions based on an applicant’s declaration should be accepted as verification for medically frail and caregiver exemptions as the statute permits. [Name of your Medicaid program] already uses self-declarations without additional verification for caretaker relative eligibility [add other eligibility categories that your state accepts self-declaration for].2  

Real world application [insert your own example or customize this one]: Marsha, 56, is applying for Medicaid. She has diabetes and arthritis which significantly limit her mobility and have forced her to go weeks without working. Marsha qualifies for a medically frail exemption since one of her activities of daily living are limited. She does not own a car or have access to public transportation, and, being uninsured, she does not have a primary care provider. Last time she ran out of insulin, she ended up in the emergency room. 

In Marsha’s case, individual declaration would be the most accessible and efficient method for verifying she is eligible for the medically frail exemption. If the state required medical or other documentation of her condition, then Marsha would be in an impossible position where she cannot access Medicaid without first getting health care from a provider to verify she is medically frail. Marsha would have to either pay out-of-pocket to get documentation or potentially go to the emergency room. This creates expensive and burdensome delays for both Marsha and the state. 

We also urge the state to reduce administrative burden by automatically renewing exemptions, including those based on disability, functional impairment, or a chronic condition that is unlikely to change over time. Similarly, the caregiver exemption should be automatically renewed for as long as the caregiving relationship lasts. 

H.R. 1 requires states to use an ex parte process to verify exemption eligibility and avoid requesting individuals to provide for additional information whenever possible. The state should maximize such data‑driven verification by linking and cross‑checking existing state sources to identify people who qualify for the medically frail exemption, such as [Medicaid claims, Managed Care Organization (MCO) records, long-term services and supports and other disability and aging services data, and behavioral health records]. Similarly, the state may be able to use existing data to exempt some caregivers, such as those being paid under Medicaid Home- and Community- Based Services (HCBS) programs. Ex parte data that confirms an individual meets a statutory exemption should be applied automatically without requiring the applicant or enrollee to provide additional documentation confirming their exemption status. Importantly, even when maximizing these data sources, the state must accept declaration since most family caregivers are not identified in existing data sources and many people who qualify for the medically frail exemption, like Marsha, cannot easily document their condition, especially without Medicaid. 

Ensure accessibility, due process, and operational safeguards. 

Given the extensive and confusing nature of these work requirements, it is essential for the state to provide clear and accessible information to applicants and enrollees. This includes plain‑language, accessible notices in multiple formats and languages explaining the reporting requirements, exemptions, and information about requesting accommodations. It is especially important that the state test applications and any technology and include older adults among the testers.  

Medicaid enrollees should also have accessible options, such as a well-staffed hotline, to reach trained and knowledgeable staff to ask questions or get additional information. The state should also be explicit about enrollees’ right to appeal adverse decisions, including an opportunity to temporarily continue coverage pending appeal and an opportunity for a hearing. This includes providing clear deadlines for requesting appeals and for agency decisions, and ensure beneficiaries receive timely notice of those deadlines. Beneficiaries should also be offered assistance, including help completing forms, requesting continuations, and obtaining representation or advocacy support. 

[Additional topics to raise if relevant to the state (e.g., utilizing Beneficiary Advisory Committees and other stakeholder engagement opportunities; data sharing responsibilities, role of MCOs and third-party contractors, privacy concerns and proper use of data, etc.)] 

Conclusion 

We appreciate your careful consideration of these recommendations and urge the state to adopt these policies and practices to protect access to care while implementing work requirements. Establishing clear exemption rules and processes consistent with Congress’s intent to exempt people with serious and complex health conditions and family caregivers for older adults, prioritizing screening tools and ex parte renewals, and providing robust due process rights will reduce wrongful terminations and help preserve health and independence for older adults, people with disabilities, and their caregivers. 

[Add request for meeting and/or individual contact info] 

Endnotes

  1. Tavares, J. and Cohen, M., What are Socio-Demographic Characteristics of Medicaid Expansion Population compared to Non-Expansion Medicaid Population age 50 to 64? Analytic Brief, LeadingAge LTSS Center @UMass Boston (April 2025), https://www.ltsscenter.org/wp-content/uploads/2025/04/Differences-between-Expansion-and-Non-Expansion-Medicaid-Beneficiaries-April-2025.pdf.
  2. See Medicaid eligibility verification plans by state: https://www.medicaid.gov/medicaid/eligibility/medicaidchip-eligibility-verification-plans.

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