Maryland Families Struggle with Medicaid Waiver Changes

In Maryland, recent policy changes have been implemented that significantly affect individuals with developmental disabilities, particularly those who rely on Medicaid waiver programs for self-directed care. These changes are having a substantial impact on both the individuals who depend on these programs and their families, who are feeling the burden of increased bureaucracy and limited communication from the state.

The policy changes, which were introduced by the Maryland Department of Health, came as a surprise to many families. Many report that they had no opportunity to provide input into the process, and they feel the policy was rushed into implementation. In addition to this, the new regulations introduce a considerable amount of additional paperwork that families now have to navigate in order to maintain their care services.

On October 31, the Maryland Department of Health sent an email to families informing them of the changes. These policy adjustments specifically impact families using the Medicaid waiver system under the “self-directed” model. This means families who manage the care of their loved ones with developmental disabilities directly—rather than sending them to institutionalized care facilities—are the ones most affected by these changes.

Among the key changes are alterations to the wage increase process for care aides, more stringent documentation requirements for support brokers, and the implementation of more detailed timesheets and invoices. Families will also need to provide additional documentation in order to access government funds to support their loved ones. These changes create more barriers for families already managing complex care routines for individuals with developmental disabilities.

Originally set to take effect on November 7, the new policy implementation was delayed until November 21, giving families a short window of time to adjust. Still, the sense of urgency and the increased administrative burden have left many feeling overwhelmed.

Advocates, including those from the Self-Directed Advocacy Network of Maryland, have voiced their concerns about how the new policies complicate the care process. Families have reported that the increased paperwork and the additional oversight will significantly reduce the quality and accessibility of care that their loved ones with developmental disabilities receive.

Carmen and her mother, Genevieve Houston-Ludlam, are two such individuals who are dissatisfied with the policy changes. Genevieve, in particular, expressed frustration at the lack of communication from state officials before these changes were introduced. “They did not talk to us before they dropped this policy out into the universe, and when we have been telling them this is going to hurt our loved ones, it’s crickets,” Genevieve said.

Genevieve fears the consequences these changes will have on her daughter’s care. “There’s going to be some damage done. We’re going to lose staff. We’re going to lose vendors. People who aren’t getting paid, who won’t get paid, aren’t going to do work for our loved ones anymore,” she added. The reality of this shift means that many care providers might walk away from their work, leaving families in a difficult position.

In response to the criticism, the Maryland Department of Health released a statement, reassuring families that the changes were designed to improve efficiency and oversight. The statement read, “Changes will not only help reduce processing delays—ensuring care providers are paid in a more timely manner and participants receive the level of care they need—but will ensure that these taxpayer-funded services are delivered responsibly and with appropriate oversight, in accordance with state and federal authorities.”

Despite this reassurance, many families and advocates remain concerned about the consequences of these changes. For those who rely on self-directed care models, the loss of trusted staff and providers is not just an inconvenience—it’s a direct threat to their loved ones’ well-being. The new paperwork and procedural requirements are a significant stressor for families already stretched thin.

Genevieve and others are committed to advocating for change. “We’re going to keep pushing,” Genevieve said. “This isn’t just about us; it’s about everyone with developmental disabilities who deserves to be treated with respect and dignity. We’re not giving up until something can be done to fix this.”

While the Maryland Department of Health insists that the policy changes are in the best interest of families and the state’s resources, the concerns raised by families cannot be overlooked. As these new regulations continue to unfold, the ongoing dialogue between the state and the families affected will be crucial in finding a balance between oversight and the ability to provide quality care.