To whom it may concern:

As a parent of a young man with autism, I am writing to express my opposition to the proposed regulations for Virginia Medicaid waivers that would require the families of disabled Virginians to be employees of a licensed home care agency in order to receive payment for full-time care of their loved ones.

Paid or not, families in this situation must make great personal sacrifices. Many of these persons with disabilities who are eligible for Medicaid waivers need around-the-clock care, even for everyday personal needs. Many families in these situations, like our own, often cannot take part in routine activities such as eating in restaurants, grocery shopping, family vacations, or weekend trips without extensive planning that includes care-giving for our son. We have some care providers, but must provide some care ourselves. The benefit to us is that this arrangement allows us to care for our son in our home, but the other side of the coin is that there are many times throughout the day and night that our son, often unpredictably, requires attending of some kind.

The proposed regulations would create an undue burden on so many families like ours and potentially forcing families to make difficult choices about the care of their loved ones. The requirement to become an employee of a licensed home care agency would add significant burdens for families by imposing a complex legal/administrative layer to support services that adds no value to the care provided. Many caregivers would likely lose the flexibility and control they currently have to provide personalized care and maintain a strong bond between themselves and the person receiving care.

I urge you to reconsider these proposed regulations and instead, work with stakeholders to develop a more reasonable and compassionate approach to addressing the needs of individuals with disabilities and their families. By continuing to support the current system, we can ensure that individuals with disabilities are able to receive the care they need and deserve, while also recognizing the critical role that families play in providing this care.

Thank you for your attention to this important matter.

Sincerely,

Bernard Adelsberger

Fairfax Station, Va.