At the recent DC Council Committee on Health hearing, chaired by Christina Henderson, one message came through clearly: DC’s health systems are under strain, and children and youth with disabilities and special healthcare needs (CYSHCN) cannot afford instability.

The hearing brought together agency leaders, advocates, and community members to discuss the state of DC Health programs, including Title V services, behavioral health access, and the broader safety net families rely on. While there was recognition of progress, testimony repeatedly underscored the growing pressure on families — particularly immigrant households, low-income caregivers, and those raising children with complex needs.

AJE’s Role as a New Title V Implementing Partner

Among the advocates who testified was Chioma Oruh, Health Justice Project Director at Advocates for Justice and Education (AJE). Dr. Oruh expressed deep gratitude to DC Health’s Title V team for treating AJE as a true partner and investing in its service delivery model over the next five years. But she also made clear: partnership alone is not enough in the current climate.

Growing Instability After Federal Changes

Dr. Oruh pointed to instability intensifying since the passage of the so-called “One Big Beautiful Bill.” According to her testimony, mixed-status families, low-income caregivers, and families of children with disabilities are experiencing:

• Increased fear around accessing services

• Delayed medical and behavioral health care

• Heightened uncertainty about insurance coverage

This instability compounds longstanding inequities in DC’s health systems.

What the Data Shows

Through the Health Justice Project (HJP), AJE conducted a 2023 Community Health Needs Assessment that revealed persistent structural barriers:

• 26% of families reported not receiving helpful or appropriate care

• 19% cited inadequate insurance

• 17% lacked access to quality services nearby

• 12% identified transportation as a barrier

These are not marginal issues — they are systemic gaps that shape daily life for families navigating disability and healthcare systems.

Building Parent and Youth Leadership

Rather than simply documenting problems, AJE is building infrastructure for solutions.

The organization has:

• Onboarded its fourth cohort of Parent Ambassadors

• Established a bi-monthly Community Health Advisory Panel (CHAP) co-chaired by parents

• Begun launching a Youth Advisory Board

• Prepared for year two of its Health Policy Camp using a two-generation model

This approach equips caregivers and transition-aged youth with disabilities to shape policy directly — not as passive recipients, but as leaders and workforce pipeline builders.

At the hearing, this emphasis on leadership development stood out. It reframed families not as “clients” but as architects of systemic change.

Title V as Core Public Health Infrastructure

Perhaps the most urgent message was that Title V CYSHCN must be treated as core public health infrastructure — not as a supplemental program.

Projected healthcare cuts and economic strain threaten to:

• Push immigrant parents off coverage

• Drop working families off insurance cliffs

• Further stretch already fragile behavioral health systems.

Urge DC Health to invest upstream — in:

• Strengthening school-based health services

• Expanding culturally responsive provider training

• Building coordinated, family-centered and person-centered systems

These investments are preventative strategies that reduce long-term costs while increasing pathways to high-quality, self-determined, and dignified lives.

The Bigger Question for the Council

This hearing raised a much broader question for the Committee on Health: Will DC treat disability systems as central to public health, or continue to underinvest across the lifespan?

For children and youth with special healthcare needs — and the families raising them — this is not theoretical. It determines whether care is accessible, culturally responsive, and sustainable.

As Chairperson Henderson and Committee members consider budgets and oversight priorities, we must continue to make it clear that equity requires structural investment, not short-term patchwork.

The path forward demands urgency, partnership, and the recognition that health justice for CYSHCN is foundational to DC’s public health future.