Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
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3/29/23  10:29 pm
Commenter: Ann Masch

Don’t deny disabled people choice in caregivers

As the parent of two daughters with Down syndrome I am imploring Governor Youngkin to stop interfering with their right to CONSUMER driven choice in caregivers. I believe that the motivation is to take away live-in help because it’s not taxable income. While that might be a deficit to the coffers please understand that there is a HUGE cost to someone’s dignity when they can’t choose the person who takes care of them. The kind of care that is often intimate care, care not easily scheduled, and care that requires integrity and efficiency. So many times that care is best provided by someone who lives with them-family. At some point politicians have to realize that their constituents are more than just a plus or minus on the tax table. Virginia has a history of abuse and neglect towards its citizens with intellectual disabilities. In the last decade real progress has been made. Why does Governor Youngkin want to take Virginia backwards? He has  no clue how rare it is to hire a caregiver who will help my adult  daughter remember to take her medicine, assist her with hygiene, handle her emotional outbursts, and make sure she’s safe for a single four hour shift, much less for forty hours a week. It doesn’t happen. I could bore you with the stories of attendants who shamed her, ignored her, called out sick at the last minute, didn’t show up, quit without notice, or mistreated her but I’m guessing a lot of parents could do the same. The fact that the attendants get no benefits, vacation, and only 3 sick days a year  might be why. Families tend to be a lot more tolerant of these deficiencies in the caregiver position because these individuals are their heart, soul, and life. In recent years it got a little better because we could care PROPERLY for our loved ones. Now Governor Youngkin is frightening these disabled individuals and their families by threatening to destabilize the structure carefully erected to keep them cared for and safe. The Department of Justice has been investigating VA for over a decade for its failure to care for and protect its most vulnerable citizens.  This should be a source of shame to all Virginians. It would appear that abuse and neglect are becoming the standard once again. I really hope Mr. Youngkin draws upon the strength and compassion of his faith and resists the urge to ignore the special needs of his disabled constituents. They have no weapons with which to fight indifference. Please don’t make these changes. 

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