To the Virginia Department of Medical Assistance Services (DMAS):

Re: Proposed Reduction/Elimination of Service Facilitation and Reduction of Caregiver Hours

I am writing this letter as a mother, a full-time caregiver, and an advocate for my 35-year-old daughter who has significant disabilities and depends on me for virtually every aspect of her daily life.

I have cared for my daughter for many, many years. Before becoming her full-time caregiver, I had a career in banking. I made the decision to devote my life to caring for my daughter because she needs me—and because I will not abandon her.

My daughter has cerebral palsy, uses a wheelchair, and is completely dependent on another person for her care. She cannot independently perform the basic activities of daily living. She requires assistance with essentially everything. Her care does not stop after 16 hours, and her disability does not disappear when the hours that Medicaid pays for run out.

I currently provide 16 hours of paid care every day, seven days a week. That is 112 hours of care every single week. The fact that I am her mother does not make the remaining hours of care any less real, demanding, or necessary.

Now I am being told that DMAS is considering taking away our service facilitator and potentially reducing the hours of care my daughter receives.

I need you to understand what that means for our family.

This is not a number on a spreadsheet. This is my daughter’s life.

Our service facilitator is not an unnecessary luxury. This person is an essential part of helping me navigate an extremely complicated system and helping me when problems arise. When something goes wrong, I need someone who understands the system, knows what needs to be done, and can help me advocate for my daughter. Without that support, I would be left trying to navigate an already overwhelming system completely on my own.

I have spent years doing everything I possibly can for my daughter. I manage her care. I coordinate her needs. I advocate for her. I handle the things she cannot handle for herself. I am there 24 hours a day, seven days a week.

Who is supposed to take over if I cannot do it?

And if DMAS reduces her authorized hours, who exactly is expected to provide the care that is no longer being covered?

My daughter cannot get herself out of bed. She cannot simply prepare her own meals, take care of her personal needs, transfer herself, get into her wheelchair, manage her medications or respond independently when something goes wrong. She cannot tell someone what she needs in the same way an independent adult can.

She needs a person.

She needs me.

And she needs a system that recognizes the reality of her disability instead of trying to reduce her care because of a budget or policy decision.

I understand that Virginia Medicaid has financial responsibilities and that programs must be managed. But I strongly object to balancing those responsibilities on the backs of people with profound disabilities and the family members who have devoted their lives to keeping them safe at home.

I am asking DMAS to look at my daughter’s actual needs, not simply a number of hours on a form.

Please consider what happens when you remove the service facilitator.

Please consider what happens when you reduce her authorized care hours.

Please consider the physical, emotional, and financial burden that is placed on the family caregiver who is already providing care around the clock.

Most importantly, please consider what happens to my daughter.

She deserves to remain safe in her home. She deserves dignity. She deserves consistency. She deserves access to the services that allow her to live her life with the highest level of independence possible despite her profound disabilities.

I am not asking for special treatment.

I am asking DMAS not to take away services that my daughter genuinely needs.

I am asking you to recognize that her needs do not change simply because Medicaid funding is being reconsidered.

I have spent my life caring for my daughter. I will continue to fight for her because she cannot fight this fight for herself.

But I should not have to fight the very system that is supposed to help protect her.

Before any reduction in hours or elimination of service facilitation is made, I am asking DMAS to fully review my daughter’s individual circumstances, her level of dependency, her medical and personal care needs, and the extraordinary amount of care she requires every day.

Please do not make a decision based solely on cost. Make it based on the person behind the paperwork—my 35-year-old daughter who depends on this care to remain safe and at home.

I am asking you to reconsider these proposed cuts and to protect the services that my daughter and our family depend upon.

I would also like a written explanation of the specific reason for any proposed reduction in hours or elimination of service facilitation, the policy or assessment being used to make that determination, and the process for formally appealing the decision.

My daughter has a voice, even though she cannot physically advocate for herself.

Today, I am that voice. And I will continue to advocate to the day I die.

Karin M King