For children with disabilities and special health care needs, knowledge of and access to early intervention services are an essential strategy for meeting attainable developmental milestones and/or beginning early planning for the long game of securing necessary lifelong health and developmental support. Federal regulations under 42 CFR Part 441, primarily authorized by the Social Security Act Amendments of 1967, entitle Medicaid-eligible children and families to the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) mandate. EPSDT is a robust package of benefits designed to ensure every Medicaid-eligible child receives preventive screenings and all “medically necessary” corrective treatments, including services such as speech, physical, and occupational therapy, starting from birth to 21 years old.

However, by the early 1990s, the District of Columbia’s Medicaid system neglected to keep up with the EPSDT mandates, and many families faced insurmountable barriers accessing early and preventative services, rather than a bridge to these services. The District did not notify parents of their EPSDT rights, failed to provide accessible screening and evaluation services,, and routinely denied or terminated benefits without due process. These failures, combined with massive delays in processing Medicaid applications, create yet another barrier to access for families waiting for eligibility determinations. In 1993, courageous families, including the family of the lead plaintiff Oscar Salazar, resisted the lackluster implementation of critical care and sought legal representation from the law firm Terris, Pravlik & Millian, LLP. Together, they filed the landmark class action lawsuit Salazar v. District of Columbia in 1993 to hold the District accountable for violating the protection of the legal rights of more than 100,000 children. After a seven-day bench trial occurred after three years of active litigation, the Court found the District had denied the rights of the plaintiffs, violating both Federal and District of Columbia laws. In 1999, after the District filed an appeal against the initial ruling, the Courts issued a Settlement Order (or consent decree) based on a settlement agreement between the parties, leading to several modifications over the years that continue until now.  

Systemic Failures in D.C. Medicaid Implementation

According to the case summary on the TPM website, the lawsuit was prompted by three primary injustices:

• Application Delays: The District was failing to issue eligibility decisions or provide Medicaid coverage within the legally mandated 45-day window after an application was submitted.
• Lack of Due Process: Beneficiaries were having their healthcare coverage terminated, suspended, or discontinued without receiving advance notice or an opportunity for a hearing to contest these adverse actions.
• Denial of Children’s Health Services: Most significantly, the District failed to provide or even notify parents about EPSDT (Early and Periodic Screening, Diagnostic, and Treatment) services. This federal mandate requires states to provide a robust package of preventive and corrective care, such as well-child visits, dental care, and speech therapy, for children from birth to age 21.

The Effective Advocacy of Community Lawyering 

Since the initial filing in 1993, TPM enlisted a formidable legal team committed to the long game in this pursuit to correct gross violations of Federal and District of Columbia laws against the health care rights of vulnerable children and their families. Since 2011, attorney Zenia Sanchez Fuentes has been the class counsel at TPM in the Salazar case, representing District families in the many filings over the years that have kept this decades-old case active and holding the District accountable for the evolving settlement agreement. Sanchez Fuentes has not only monitored the District’s compliance at a high level but has also provided individual legal help at no cost to families facing benefit terminations and other navigation challenges specific to EPSDT violations. Her leadership and support have helped parents navigate a complex bureaucracy to secure reimbursements for out-of-pocket expenses and fight for denied services. The Salazar case continues to seek EPSDT compliance, including reimbursement for out-of-pocket expenses when the system failed to cover services it was legally obligated to provide.

The Outcome: A New Era of Accountability

After 25 years of court monitoring under a 1999 Settlement Order, a new agreement was reached on October 31, 2025, to transition the District out of court oversight. While the monitoring is still in the process of ending, the settlement introduces permanent tools for transparency and parent empowerment, including:

• Public Online Dashboard: The District will publish a report card comparing how managed care plans (MCOs) perform against national standards for child health.
• Child Health Subcommittee: A new group within the Medical Care Advisory Committee (MCAC) will focus on children’s issues, providing a direct loop for families to speak with Medicaid leadership.
• Caregiver Stipends: To ensure the voices of those most impacted are heard, caregivers will receive a $75 stipend per meeting to participate in the subcommittee.
• Reimbursement Extension: The window for families to seek reimbursement for out-of-pocket costs has been extended from six months to one year.

Guidance for New Caregivers on Navigating Care Systems

For caregivers with Medicaid-eligible children new to navigating EPSDT services in the District of Columbia, the Salazar case proves that justice delayed is not justice denied, and that parental expertise is sometimes the only protective factor against dysfunctional public policy implementation and the lack of political will to correct errors without litigation. The case, Salazar v. District of Columbia, is more than just a docket number; it is a testament to the power of collective parent action and a roadmap for holding government agencies accountable when perpetuating injustice.

Zenia serves as a bridge between the complex legal system and the families it serves. In AJE’s “Voices of Health Justice” podcast, she provided a comprehensive breakdown of the new settlement, explaining how parents can use new tools such as the online dashboard and civically engage with the Child Health Subcommittee of the Medical Care Advisory Committee, or the MAC, Child Health Subcommittee to continue to hold the District accountable as court oversight comes to a close. She continues to emphasize that parents are their own best resources and should never take no for an answer when it comes to their children’s rights.

To hold agencies accountable, consider these strategies:

• Do Not Accept “No”: If a managed care plan tells you a service is capped or denied, but your doctor says it is medically necessary, you have a right to that care.
• Escalate Your Issues: If you hit a wall, do not stop at the first person who says no. Escalate concerns to supervisors in provider agencies, Managed Care Plan care coordinators, contact the D.C. Council’s Committee on Health, or reach out to the Office of the Health Ombudsman. Do not suffer in silence.
• Use the Grievance Process: Every Managed Care Organization (HSCSN, MedStar, WellPoint, and AmeriHealth Caritas) has a grievance and appeal process outlined in their enrollee handbook. Filing a formal grievance creates a paper trail and requires a resolution within 90 days.
• Leverage the Dashboard: Once live, use the public data to show officials exactly where services are falling short.

The Power of the Village

The most profound lesson of Salazar is the power of parent-led advocacy. The true strength of the Salazar case lies in the interdependence of the parents involved. As members of the Advocates for Justice and Education (AJE) Parent Ambassador program often share, this movement for disability justice and family-centered policy practices is about being “your brothers’ and your sisters’ keeper.” This involves attending IEP meetings together, sharing your expertise, and providing the “village” when the system often fails to provide adequate care and services.

One AJE Parent Ambassador likened this community action to the Black Panther Party’s free breakfast programs, which were created to address the immediate, vulnerable nutritional needs of school-aged children as a radical act of love,  shielding the community against the oppressive policies and social neglect. By standing together, parent advocates have historically proven that collective action ensures that D.C.’s children remain a top priority and that the hard-won victories of the Salazar case and so many other landmark cases led by District families have long-lasting, generational impact. To learn more about this landmark case and hear directly from the families involved, tune into the AJE “Voices of Health Justice” podcast.