To Whom It May Concern,

My name is Makenzie, and I am writing as the sister of Hayley, a Virginian with significant disabilities who is confined to a wheelchair and depends on others for her daily care, safety, and well-being.

Hayley cannot simply be left alone when there is no one available to care for her. She depends on another person for many of her basic daily needs and for her safety. For our family, consumer-directed services are not a convenience. They are what make it possible for Hayley to live safely at home with the people who know her, love her, and understand her needs.

I am extremely concerned about proposed changes that would eliminate or significantly change service facilitation and potentially reduce the number of attendant-care hours available to people like my sister.

Our service facilitator provides something that cannot simply be replaced by a payroll company. Service facilitators understand Medicaid services, consumer-directed care, attendants, authorizations, and the complicated situations families like ours face. They also provide another important layer of contact and oversight—checking on Hayley, making sure she is receiving the care she needs, asking whether anything has changed, and helping our family navigate problems when they arise.

A payroll company serves an important administrative function, but processing payroll is not the same as knowing Hayley, understanding her needs, or understanding what is happening inside her home. Removing knowledgeable service facilitators would take away an important source of support for individuals with significant disabilities and their families.

I am equally concerned about any reduction in the number of attendant-care hours Hayley can receive. Hayley is currently authorized for up to 16 hours of care per day because she requires extensive assistance. Those hours represent real needs.

Reducing the number of hours on paper does not reduce the number of hours Hayley needs care.

My mother provides a tremendous amount of Hayley’s care. The current system allows her to care for her daughter while also receiving compensation for some of the work that must be done every single day. If Hayley’s authorized hours are significantly reduced, my mother may be forced to seek full-time employment outside the home simply to pay her own bills.

That creates an impossible situation. She would have to work a full-time job while our family simultaneously tries to find someone else who can provide the care Hayley still needs. Hayley’s disability and needs do not disappear because her authorized hours are reduced.

For families like mine, these decisions have consequences far beyond a budget or an administrative change. They affect whether a person with a significant disability can remain safely in her home. They affect continuity of care, financial stability, safety, dignity, and quality of life. They also place additional pressure on family caregivers who are already carrying enormous responsibilities.

Hayley deserves to be seen as a person, not simply as a number of authorized hours on a Medicaid plan. She deserves dependable care from people who know her and understand her needs. My mother should not have to choose between keeping her daughter safe and being able to financially support herself.

I respectfully ask DMAS and Virginia’s elected leaders to listen directly to individuals with disabilities and their families before making these changes. Please preserve meaningful service facilitation and protect the attendant-care hours that individuals with significant disabilities have been determined to need.

Before reducing these supports, I ask you to consider one simple question: If Hayley’s hours are taken away, who will be there to care for her?

For my sister and our family, that is not a hypothetical question. It is our everyday reality.

Thank you for taking the time to hear our family’s story and for considering the real-life impact these changes could have on Hayley and other Virginians who depend on these services.

Sincerely,

Makenzie DeLea
Sister and advocate for Hayley King