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Families Deserve Support, Not Scapegoating: A Call for Change in Disability Services

For families navigating life with disabilities, systemic barriers often feel insurmountable. These challenges are painfully evident in Maryland’s Developmental Disabilities Administration (DDA), where policies and practices have created a crisis for those relying on vital services.

A Personal Story: The Fight for Support

Adam Wyndham’s story about his 9-year-old daughter, Emily, sheds light on the systemic flaws. Emily, who has Rett syndrome, has flourished through Self-Directed Services (SDS), part of Medicaid’s Home and Community-Based Services (HCBS). Yet, securing these services required years of relentless advocacy against a bureaucracy seemingly designed to deter families from accessing the help they desperately need.

This is not an isolated case. Across Maryland, families report similar struggles—whether it’s endless paperwork, denied claims, or navigating arbitrary policy changes.

Systemic Failures and Policy Chaos

A major source of frustration is the implementation of Electronic Visit Verification (EVV), mandated by the federal 21st Century Cures Act. While intended to improve oversight, EVV has disrupted caregiving services, leading to unpaid caregivers and workforce shortages.

Disability advocates protesting at Maryland's State House

The DDA has compounded these issues with opaque policy changes. Families previously received critical services based on standardized health risk assessments. But now, they face unclear requirements for nursing or behavioral plans, with no guidance on compliance.

Perhaps most troubling is the DDA’s recent policy overhaul, crafted without public input or legislative review. Families and stakeholders were excluded, leaving them unprepared for the sweeping changes. When families raised concerns, state officials dismissed them, even implying fraud among SDS participants—a baseless accusation refuted by a 2022 audit.

The Real Issues

It’s not families abusing the system; it’s the system failing families. The 2022 audit highlighted significant inefficiencies within the DDA itself, including $3.2 million in unspent funds and $8.8 million in unclaimed federal reimbursements. Yet, these failures have not prompted the same scrutiny or accountability applied to families seeking support.

Caregivers like Wyndham face an uphill battle, from securing adaptive equipment to maintaining essential services. These are not luxuries but necessities for individuals like Emily to live with dignity and independence.

A Call for Change

Families with disabilities deserve respect, clear communication, and access to essential resources without undue burden. Here’s what needs to change:

  1. Transparent Policy Development: Include families and stakeholders in creating and revising policies to ensure they are practical and equitable.
  2. Accountability for Leadership: Address inefficiencies within DDA and hold officials accountable for administrative failures.
  3. Timely Payment for Caregivers: Streamline processes to ensure caregivers are paid on time, reducing turnover and ensuring continuity of care.
  4. Shift the Narrative: Stop scapegoating families and focus on their resilience and contributions to the system.

The Road Ahead

The challenges faced by families with disabilities are emblematic of a broader issue: a service system that prioritizes bureaucracy over people. It’s time for Maryland and other states to adopt a people-first approach that values the dignity and needs of individuals with disabilities and their families.

The fight for change must be a collective effort. Families, advocates, and policymakers must come together to build a system that works for everyone—a system that supports, rather than hinders, those it was designed to serve.

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