Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
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3/29/23  8:37 pm
Commenter: Jane Stanley

Parents as paid caregivers

I am at a loss to describe how I feel about the proposed changes.  Parents of children with disabilities go through so much.  They are their full-time caregivers.  We have to fight for any resource that our children get.  Our lives are completely upended because of their disability.  But we love them with all our hearts, and would do anything for them.  We give up jobs, financial security, friendships, free time, to care for their needs.  Parents as paid caregivers is a common sense policy.  Every parent that I know would gladly hire an outside caregiver if a suitable one could be found.  And yet, most parents that I know CANNOT, after years of searching high and low find a safe, reliable caregiver for their child on the waiver.  What is the alternative?  They don't receive care?  The whole point of the disability waivers is that it is for individuals with high needs.  But the pay that is offered is not competitive.  It boggles my mind that the people trying to create these rules do not see the point.  We searched for a caregiver for my son for three years.  In that time, we found ONE caregiver.  She wanted to work about 5 out of his approved 30 hours, would frequently call in sick, and left after about 7 months.  It does not make any sense to take away the option for parents to be paid caregivers if there are not safe, trained workers to take their place.  You are essentially saying that our disabled children will go without care.

CommentID: 215032