Service facilities and hours

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 38-year-old Christopher who has significant disabilities and depends on me for virtually every aspect of his daily life.

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

Christopher can't do things and is completely dependent on another person for his care. he cannot independently perform the basic activities of daily living. he requires assistance with essentially everything. His care does not stop after 16 hours, and his 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 his person that does everything for him that it 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 Christopher receives.

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

This is not a number on a spreadsheet. This is Christopher 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 Christopher. 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 Christopher. I manage his care. I coordinate his needs. I advocate for him. I handle the things he cannot handle for himself. 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 his authorized hours, who exactly is expected to provide the care that is no longer being covered?

 he cannot simply prepare his own meals, take care of his personal needs, transfer hisself, get into tub he can't, manage er medications or respond independently when something goes wrong. he cannot tell someone what he needs in the same way an independent adult can.

he needs a person.

he needs me.

And she needs a system that recognizes the reality of his disability instead of trying to reduce his 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 Christopher 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 his 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 Christopher. 

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

I am not asking for special treatment.

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

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

I have spent my life caring for Christopher I will continue to fight for him because he cannot fight this fight for himself.

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

Before any reduction in hours or elimination of service facilitation is made, I am asking DMAS to fully review Christopher circumstances, his level of dependency, his medical and personal care needs, and the extraordinary amount of care he requires every day.

Please do not make a decision based solely on cost. Make it based on the person behind the paperwork—Christopher is a 38-year-old 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 Christopher 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 proc.  Thanks for taking your time to read this .   Ramona Reitnauer