Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
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3/28/23  8:18 pm
Commenter: Kelly Kiser

Keep parents as caregivers

My sweet 6 year old is non verbal, unable to walk or see, and has seizures daily while requiring a tube for feeding. It is not in her best interest to be cared for by a stranger from an agency. She is unable to speak up for herself or let me know if something is wrong. A agency would not be able to understand her needs. Parenting a severe disabled child is a hard job that doesn’t end at 5pm. It’s days and night, driving hours to specialist appointments, juggling feeding into these appointments, and making sure complex needs are met everyday 24 hours a day 7 days a week. No one is able to meet our children’s needs better then the parent. Having the parent care for the child with the assistance of the waiver is far more economical then by an agency that doesn’t know the person. Being in the care of a stranger would increase medical visits because they would not understand the cues she getting ready for a large seizure and treat it before it happens for an example. Having parents be monitored through an agency is just another hoop that a over worked over tired parent doesn’t need on their plate. I wish my child did not need a waiver. I wish I could return to my job each day. But unfortunately we can’t because her needs have grown so large. Please for all the parents that devote their lives to the special beings weather they are 6, 16, or 36. Say no to this change. 

CommentID: 214577