I am writing as the MOTHER of a disabled child who relies on waiver services and consumer-directed care. I respectfully ask DMAS to consider the very real impact these proposed changes could have on families like ours, particularly families who rely on a parent or other legally responsible individual to provide care.

For our family, having a parent provide care is not simply a matter of convenience or preference. It is what makes it possible for our daughter’s needs to be met safely and consistently.

Our daughter needs care before and after school, but she also has appointments during hours that make hiring a traditional caregiver extremely difficult. Every Tuesday, she has physical therapy at 2:00 p.m., approximately 40 minutes from our home. Every Thursday, she has occupational therapy at 8:00 a.m., also approximately 40 minutes away. We have already experienced how difficult it is to find someone willing and able to work around these fragmented hours. Hiring someone for the limited periods before and after school while also accommodating therapy appointments has proven nearly impossible.

Even if we could find an outside caregiver willing to work this schedule, that person would need to transport our disabled daughter approximately 40 minutes each way to some of her appointments. As her parents, we are not comfortable routinely placing her transportation and safety in the hands of a rotating or unfamiliar caregiver simply because a policy makes parental caregiving more difficult.

Our family circumstances make this even more challenging. My husband works in Maryland and Pennsylvania. When his work takes him to Pennsylvania, he can be away from home for an entire month at a time. During those periods, I am the parent available to coordinate our daughter’s daily care, school schedule, therapies, transportation, and other needs.

Families like ours need flexibility because disability does not fit neatly into a traditional work schedule. A caregiver who is available from 9:00 to 5:00 does not solve the problem when a child needs assistance before school, after school, transportation to therapy in the middle of the afternoon, or an early-morning appointment 40 minutes from home.

Please do not create policies that assume families can simply replace a parent caregiver with an outside employee. In many communities, especially for families needing split shifts, irregular hours, transportation, and specialized knowledge of their child, that caregiver may not exist.

I ask DMAS to preserve meaningful access to consumer-directed care and the ability of qualified parents and legally responsible individuals to provide paid care when it is necessary to meet the individual’s needs. Any exceptions process should be accessible, timely, and based on the actual circumstances of the individual and family—not an assumption that another caregiver can simply be hired.

Our goal is not to avoid outside help. Our goal is to ensure that our daughter receives safe, consistent care from someone who knows her needs and can actually be there when she needs assistance.

Please consider families like ours when evaluating these changes and protect the flexibility that allows children and adults with disabilities to remain safely in their homes and communities.