Introduction
Over 600,000 individuals return to their communities after incarceration each year in the United States. 1 Incarceration is a determinant of health, and reentry provides an important opportunity for interventions to address individual and population health concerns.Reference Brinkley-Rubinstein 2 Those who are incarcerated experience greater needs related to medical health, mental health, and substance use disorder treatment, and health conditions tend to worsen upon release from jail or prison.Reference Binswanger and Franco 3 Rates of emergency department visits and hospitalizations are also higher among returning community members compared to the general population, particularly for mental health- and substance use-related issues, among other conditions.Reference Frank 4 The two-week period following release places individuals at higher risk of death from causes including drug overdose, cardiovascular disease, homicide, and suicide.Reference Binswanger 5 Policies and practices contributing to mass incarceration that are shaped by structural racism and racial bias 6 disproportionately impact Black Americans, resulting in state prison incarceration rates six times higher than the rates for white Americans.Reference Kirzinger 7 These disparities in the carceral system contribute to and exacerbate racial health disparities post-incarceration. 8
Medicaid, a joint federal-state public health insurance program, explicitly “prohibits the use of federal funds to pay for the health care of an ‘inmate of a public institution’” except in inpatient settings such as medical institutions. 9 Also known as the “inmate exclusion policy,” this provision presents a barrier to care, not only during incarceration but also after release. Roadblocks to care in the post-release period stem from delays in the reinstatement of coverage immediately following release, 10 as well as the inability of states to use Medicaid funding for services provided prerelease that could support healthier transitions during reentry, such as screening, case management, discharge planning, and linkages to community-based providers. 11 Incarcerated people, who are disproportionately low income, tend to receive health coverage through Medicaid prior to incarceration, particularly in Medicaid expansion states. 12 Accordingly, barriers to Medicaid coverage pose substantial health risks for this population.
However, recent policy developments are altering the landscape by expanding access to Medicaid in the prerelease and reentry periods. Medicaid section 1115 reentry waivers are one key component of these changes. Under section 1115 of the Social Security Act, the US Department of Health and Human Services may waive certain mandatory Medicaid provisions so that states can experiment with approaches to coverage that would not normally be permitted. 13 In 2023, the Centers for Medicare and Medicaid Services issued guidance notifying states of Medicaid waiver opportunities to provide Medicaid coverage of services for incarcerated individuals up to 90 days before release. 14 These Medicaid section 1115 reentry waivers must comprise a minimum set of benefits, including case management to assess and address health and health-related social needs, medication for opioid use disorder, and a 30-day supply of prescription medications. 15 A state has flexibility to cover additional services and to define the population covered by its waiver. 16 As of October 2025, 27 states and the District of Columbia had filed applications for reentry waivers, and 19 were approved. 17 The remainder were still pending as of that time. 18
Medicaid section 1115 reentry waivers have the potential to greatly improve care access and continuity for those returning from incarceration. But if they are driven by carceral entities, as opposed to directly impacted communities, these waivers run the risk of replicating carceral approaches that harm health and fail to effectively meet the needs of incarcerated and formerly incarcerated people. For example, carceral agencies might prioritize surveillance and compliance monitoring over trust-based care, use medical data to extend control or punishment, or restrict provider choice to systems already embedded within correctional frameworks. They might design reentry programs that emphasize behavioral control rather than holistic support — mandating treatment participation as a condition of supervision rather than fostering voluntary engagement — or continue to exclude community-based and culturally responsive providers. Such practices can reinforce stigma, erode patient autonomy, and perpetuate inequities in access to care. This article explores potential ramifications of carceral approaches to reentry waivers and articulates an alternative path forward: centering the perspectives of people with lived and living experience of incarceration. It contends that these perspectives must drive all aspects of waiver design, implementation, and evaluation.
First, this article provides further background on the value of centering lived experience in health policy, both from our professional and personal experience. Next, it explores best practices for designing systems of care pre- and post-release that center the voices of people who are incarcerated and formerly incarcerated. These sections draw on the direct experience of Transitions Clinic Network (TCN), a health and reentry organization deeply involved in advocacy to ensure that the voices of those with lived experience of incarceration are centered in all aspects of California’s section 1115 reentry waiver. Subsequently, this article discusses the importance of centering lived experience in information sharing and privacy practices in implementation of these waivers. Across these and other areas, this article asserts that waiver implementation and efforts to promote health during reentry must not replicate carceral systems of control or reinforce the very health disparities the waivers seek to address; rather, outdated, exclusionary policies must be disrupted and replaced by systems that cultivate autonomy, dignity, and well-being upon reentry.
Centering Lived Experience in Health Policy
People who experience incarceration face profound structural disadvantages that continue long after release. They have endured environments that, by design, devalue autonomy, reduce individuals to numbers instead of names, and strip them of agency over their own lives. Upon reentry, these same individuals are expected to navigate fragmented and siloed health and social systems. Frequently, they leave carceral settings without health insurance, medication refills, or copies of their medical records. At the same time, they confront competing priorities such as securing housing, employment, and transportation, as well as meeting supervision requirements, all of which may further delay engagement in care. These challenges are compounded by stigma and the collateral consequences of incarceration — legal, structural, and social barriers to housing, employment, and public benefits that substantially hinder their ability to achieve stability and meet fundamental needs.
Within community health settings, stigma presents yet another barrier. Individuals returning from incarceration often encounter discrimination based on race, criminal record, education level, mental health diagnosis, or substance use history.Reference Nong 19 Together, these factors converge to markedly increase the risk of adverse health outcomes and mortality in the weeks following release. 20
Section 1115 reentry waivers offer a policy mechanism to address these inequities by allowing states to use Medicaid funds to support health care transitions for incarcerated individuals prior to and immediately following release. If designed intentionally, these waivers can bridge the gap between carceral and community health systems. However, the success of this effort depends on whose knowledge shapes the policy. People who have lived through incarceration understand, firsthand, the barriers to health care, the realities of social determinants of health, and the challenges of family and community reintegration. Their participation ensures that policies reflect the complexities of real lives rather than abstract assumptions.
Centering lived experience in policy development also rebalances power. It holds systems accountable to the communities they serve and disrupts the historical exclusion of impacted populations from decision-making. Policies and programming informed by lived experience tend to be more practical, trauma-informed, and equitable.Reference Attree 21 They can reduce parole and probation violation, improve health outcomes, and promote successful integration.Reference Wang 22 Moreover, when individuals with lived experience are seen and heard in policymaking, stigma is reduced. Policymakers and clinicians alike are reminded that behind every policy decision are real people, families, and communities.
The risk of excluding lived experience voices is not merely theoretical. When policies are designed without meaningful community input, they often reinforce existing structures of control, reproduce racialized inequities, and fail to meet the needs of those most impacted. People will not utilize services that are inaccessible, untrustworthy, or misaligned with their realities. Without centering lived experience, the promise of reentry waivers will remain unfulfilled.
The California Experience
The Transitions Clinic Network is a national network of primary care clinics specifically designed to serve criminal-legal involved individuals returning from incarceration. Developed in San Francisco in 2006 in collaboration with community advocates and people with lived experience of incarceration, the TCN model integrates Community Health Workers (CHWs) who themselves have experienced incarceration into clinical teams. This approach has been shown to improve engagement in care, reduce emergency department utilization, and decrease recidivism. 23 Today, TCN supports more than fifty programs across fourteen states and Puerto Rico, including a statewide network of clinics in California.
When California became the first state to secure federal approval for a section 1115 reentry waiver in 2021, TCN recognized both an opportunity and an obligation to contribute its expertise. The network sought to ensure that lived experience voices — those of CHWs and of the thousands of patients who had engaged with TCN clinics—would inform the waiver’s design, implementation, and evaluation. TCN’s statewide infrastructure, its relationships with both the health and carceral systems, and its record of evidence-based reentry health care positioned it uniquely to influence policy.
Design Phase (2021–2023)
During the waiver design phase, TCN staff served on the California Department of Health Care Services (DHCS) California Advancing and Innovating Medi-Cal Justice Advisory Group and advocated for the creation of a lived experience community advisory board. This board, composed of health and social service providers with personal experience of incarceration, met monthly with DHCS leadership to discuss core design elements such as data privacy, confidentiality, and the potential overreach of carceral systems before and after release. Their input, along with TCN’s collective experience of CHWs and healthcare providers, illuminated issues invisible to policymakers without personal experience of incarceration.
Through this engagement, several key successes emerged. DHCS required Medicaid Managed Care Plans (MCPs) to contract with agencies that prioritize hiring people with lived experience of incarceration or have experience serving the reentry population. Secondly, we advocated for existing Medicaid provisions to be applied, enabling individuals to receive a 90-day supply of medications upon release — an increase from the previous 30-day limit, which was based on a biased assumption that people would sell or misuse their prescriptions, including essential medications like insulin. TCN and its partners also advocated that health entities with deep knowledge of local system providers (such as MCPs) rather than carceral systems help match individuals with culturally effective community providers post-release.
Nevertheless, significant challenges remained. The carceral system retained substantial control over the prerelease process, and despite the waiver’s temporary suspension of the Medicaid inmate exclusion, there were no mechanisms to guarantee that incarcerated individuals’ health care rights under the waiver would be upheld within prisons. Moreover, state guidelines did not explicitly require or incentivize providers to hire CHWs with lived experience, despite evidence that such staffing improves engagement in care and health outcomes.
Implementation Phase (2023–Present)
As implementation began, several positive developments followed. MCPs contracted with TCN and other partners to build capacity among providers serving criminal-legal involved individuals. Training and technical assistance initiatives were established to enhance providers’ ability to care for this population, and financial investments were made to support the creation of new TCN programs across the state. These efforts not only advanced the goals of the waiver but also created pathways for sustainable employment for CHWs with lived experience.
However, persistent barriers hindered full realization of the waiver’s potential. The limited number of providers able to meet the state’s contractual requirements has created significant scalability challenges, made worse by the fact that the justice-involved population — one of nine priority groups, including people experiencing homelessness and those with serious mental health and substance use disorder needs, entitled to enhanced care management services through California’s waiver — was deprioritized and scheduled last, when providers were already at capacity, despite TCN’s strong advocacy to prioritize them earlier in the process. Many providers are not able to engage with patients prerelease, missing critical opportunities to build rapport and gather necessary information. Restrictions based on criminal records also prevent some CHWs from engaging with patients in carceral facilities, even through virtual methods like telemedicine. Moreover, despite the intent of the section 1115 reentry waiver and the high prevalence of individuals leaving incarceration with urgent and complex health needs, existing reentry workflows fail to distinguish those requiring immediate or intensive care from those with lower needs. This lack of differentiation undermines the waiver’s goals, creating a missed opportunity to bridge the gap between carceral and community health systems, ensure timely access to care, and prevent avoidable hospitalizations and deaths.
Lessons Learned
California’s experience illustrates both the promise and the pitfalls of the reentry waiver process. The policy arena is deeply opaque and challenging to navigate, particularly for the small, grassroots organizations that do much of the work of reentry health. Engagement requires sustained effort, coalition building, and focus on a few strategic priorities. Partnerships across health systems, carceral agencies, advocacy organizations, and managed care plans are indispensable but often hampered by lack of expertise, entrenched silos, and competing institutional priorities.
Centering lived experience requires a deep and ongoing commitment. Stakeholders may lack the knowledge — or the will — to engage impacted individuals meaningfully. Without structural supports, such as dedicated funding, policy mandates, and organizational incentives, “engagement” risks becoming tokenistic. True inclusion requires codesign, coleadership, and shared decision-making power.
Ultimately, the effectiveness of section 1115 reentry waivers will depend on whether their design and implementation prioritize empowering individuals and the community-based organizations that serve them, or primarily address the immediate administrative needs of other agencies, thereby perpetuating systems of surveillance and control. To realize their stated aim — testing innovative approaches to improve care transitions for incarcerated individuals — states must engage lived experience voices at every stage: design, implementation, and evaluation. Otherwise, these efforts risk becoming yet another unfulfilled promise in the long history of policies that claim to address, but ultimately reproduce, the harms of incarceration.
Information Sharing and Privacy
In addition to the lessons learned from the California experience, our research on information sharing practices in the context of Medicaid reentry waivers underscores the importance of centering lived experience. In implementation of the Medicaid waivers, the treatment of personal information is a potential site of punitive control if driven by a carceral, rather than community-centered, approach. Implementation necessitates a series of information disclosures. Medicaid eligibility information, release dates, and claims data must be shared with state Medicaid agencies to facilitate enrollment, timely activation of coverage in the prerelease period, and billing for covered services. 24 Additionally, case managers must collect information on individual health conditions, social factors, treatment plans, and providers to assess needs and develop care plans. 25 Some of this information may be shared with health and social care providers pre- and post-release to ensure delivery of informed and timely services. 26 Effective information sharing thus helps to avoid delays in coverage activation and gaps in crucial care during reentry, 27 which can pose serious risks for those who need continued access to medication and other treatment (e.g., people living with HIV or substance use disorder)Reference Giordano 28 during a high-risk period.Reference Ranapurwala 29
While necessary to support care access and continuity, collecting and sharing personal information can risk harming those the Medicaid waivers aim to benefit, particularly given that carceral facilities and systems routinely undermine privacy in the name of security and control, 30 and may use information in punitive ways. 31 The information involved may be sensitive, especially in light of the high incidence of certain stigmatized conditions among people who are incarcerated, such as sexually transmitted infections 32 and substance use disorder. 33 Stigma, harassment, criminalization, and other negative outcomes may result from disclosure and misuse. 34 The threat of these harms is uniquely relevant for structurally marginalized groups overrepresented in the criminal legal system, like people of color who are disproportionately subject to oversurveillance, discrimination, and criminalization. 35 When people believe (often rightfully so) that their information will be misused, they may avoid crucial servicesReference Pathak and Chou 36 and withhold information needed to deliver timely and appropriate care, as trust in providers and support networks has eroded.Reference Nong 37
In short, carceral approaches to personal information grounded in surveillance and punishment pose barriers to care, damage health, and fuel further criminalization. For Medicaid waivers to advance health and health equity, they must avoid replicating these carceral approaches in information sharing practices. Centering the perspectives of those with lived experience of incarceration provides an alternative path that fosters trust and dignity while preventing further entanglement of punitive systems in health and social care.
For example, integrating CHWs with lived experience of incarceration into the provision of pre- and post-release services can build trust based on understanding and shared experience, potentially reducing concerns that sharing sensitive information will result in stigma and discrimination.Reference Carson 38 Further, when incarcerated individuals are asked for their consent to share their information, formerly incarcerated CHWs are uniquely positioned to provide culturally competent support, ensuring that consent is informed and freely given. Too often, consent processes undermine informed, autonomous decision-making due to lengthy, inaccessible forms and the absence of meaningful support.Reference Hallinan 39 By explaining the benefits, risks, and terms of information sharing and answering questions that arise, formerly incarcerated CHWs can further a more ethical approach.
In addition to their contributions in care settings pre- and post-release, people with lived experience of incarceration can provide vital input on the overall design of data governance — the terms and conditions set forth in data use agreements, policies, procedures, and guidance. Data governance dictates what data is collected, the purposes for which it may be used and disclosed, the parties that receive data, and the safeguards in place, among other key decisions. Robust data governance that centers the perspectives and interests of those with lived experience can protect against punitive uses of data. For example, policies may create firewalls around carceral health care providers’ and case managers’ data systems, blocking access by other parts of the carceral institution; prohibit the disclosure of data to law enforcement unless required by law; and require that only the minimum data necessary be collected and disclosed. Rather than maximizing institutional control, this approach aims to advance health equity and cultivate trust and dignity in environments that routinely undermine these objectives.
Looking Forward
Centering the perspectives and interests of incarcerated and formerly incarcerated people is an ever more pressing priority. Through numerous executive actions in 2025, the Trump administration has advanced efforts to amplify the power and reach of the carceral state — for example, expanding aggressive policing, pushing for harsher sentencing, and abandoning efforts to improve conditions in carceral facilities. 40 Meanwhile, recent exploitation of sensitive information by the federal government, including Medicaid data, sharpens concerns about privacy and potential misuse. 41 Against this backdrop of intensifying punitive tactics, Medicaid and other crucial safety net programs face major divestment, such as the work requirements and other restrictions implemented in the July 2025 spending bill House Resolution (HR) 1. 42 While it does not terminate the Medicaid section 1115 reentry waivers, HR 1 will have profoundly negative effects on coverage for people with histories of incarceration. Given the significant barriers to employment that formerly incarcerated people experience, 43 work requirements will impede access to coverage and needed care. Burdensome eligibility checks will likewise pose hurdles for those navigating pressing competing needs in the post-release period. And the increased strain on Medicaid programs will produce challenges for implementation of reentry initiatives.
Amid this concurrent expansion of the carceral state and retraction of Medicaid programs, the need for policy interventions to promote the health and dignity of people caught in the criminal legal system is only heightened, as is the risk of carceral paradigms driving implementation. Meeting the moment requires an alternative approach — one that vests power in the communities most impacted and centers their unique expertise to promote health, foster dignity, and continue to dismantle health-harming systems.
Acknowledgements
Transitions Clinic Network would like to acknowledge the lived experience community advisory board; our former National Program Manager, James Mackey; and our partner clinics throughout California, dedicated to employing and serving individuals impacted by incarceration.
Disclosures
Anna Steiner, Dorel Clayton and Shira Shavit have nothing to disclose.
Emma Kaeser and Susan Fleurant: The Robert Wood Johnson Foundation provided support for the Network for Public Health Law’s contributions to this article and participation in a conference presentation on the same topic. The views expressed are those of the authors and do not necessarily reflect the views of the Robert Wood Johnson Foundation.
