On Thursday, October 24, 2024, the Developmental Disabilities Administration (DDA) in Maryland released a 116-page document introducing substantial changes to the Self-Direction program. This abrupt and sweeping revision has raised serious concerns among participants, family members, and advocacy organizations, who feel these changes disregard the principles of inclusion, respect, and transparency essential to the program.

In light of the following issues, we urgently request an immediate suspension of the proposed changes pending review by a legislative work group that includes participants, families, and other stakeholders:

Lack of Community Input: The changes were introduced without consulting participants, families, or advocacy organizations within the Self-Direction community.

Restrictions on Family-Provided Services: Provisions appear to limit services provided by family members, which could undermine the support structure many participants rely on.

Contradiction of Legislative Intent: The new rules conflict with the intent of Maryland lawmakers expressed in the Self-Direction Act of 2022.

Denial of IFDGS Program and Administrative Funding: The document attempts to restrict funding that the Maryland General Assembly recently protected by rejecting an amendment proposed by the Maryland Department of Health.

Conflict with CMS Intent: These changes may also hinder access to approved Medicaid service funding, which goes against the objectives outlined by the Centers for Medicare and Medicaid Services.
These changes have been imposed with minimal notice, giving participants only two weeks to adapt, despite the added complexity and bureaucratic barriers. Furthermore, there is a strong concern that the DDA’s new regulations prioritize administrative compliance over our right to direct the use of resources allocated for DDA services, as specified in our Person-Centered Plans.

Self-Direction is a landmark innovation in publicly funded long-term supports and services, allowing individuals with intellectual and developmental disabilities to exercise control over their care and support.

The spirit of Self-Direction, which affirms that people with disabilities have the right to direct public resources for their services, is under threat. It is vital that any changes respect this right and involve the voices of those directly impacted.

We urge you to advocate for an immediate pause on these changes and support the formation of a legislative work group to ensure that any modifications to Self-Direction honor the values and needs of Maryland’s ID/DD community.