Virginia Regulatory Town Hall
Agency
Department of Medical Assistance Services
 
Board
Board of Medical Assistance Services
 
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8/29/24  9:38 am
Commenter: Alicia Duncan

LRI and Respite
 

Please lift the limitations for LRIs and consumers with LRIs. Our children are 10 (hypotonia, anxiety, sensory processing disorder, feeding issues, migraines, developmental coordination disordero) and 13 years old (autism, ADHD, anxiety, sensory processing disorder, visual spatial processing disorder, feeding issues, etc.) and cannot tolerate strangers attending to their very personal support needs - bathing, menstrual cycle hygiene, assistance with dressing, etc. As their mother and LRI, I am the only one who should be providing this support not only for their emotional well-being and concern for privacy but also for their safety. Background checks are not enough and no one who provides high quality attendant services is going to work for so little pay. I am the best person for their care and the only person. My husband/Their father doesn’t feel comfortable or that it’s appropriate for him to provide this care so I am it. I have tried to work a full-time job and have attendants but the turnover rate and ability to find people forced me to leave my job. However, I NEED respite. We have people who can provide respite but they can’t help since respite hours are frozen. There are opportunities for my husband and I or even just me to have respite weekends through a nonprofit organization but they don’t provide care. We have to come up with respite care to attend these respite weekends. I am burned out. Marriages with children with autism have a divorce rate of 80% (psychologytoday.com). Families NEED to feel their children are safe with them and not strangers coming into our homes tasked with very private and personal attendant care and LRIs NEED respite. Please include support for LRIs to not be capped at 40 hours per week which is only 20 hours for each of my children which is LESS THAN 3 HOURS PER DAY. Who can provide this support for less than 3 hours per day??? Please include respite for LRIs in the budget. We endure the MOST scrutiny compared to other government programs like SNAP and WIC. A majority of families follow the rules and do the right thing. Don’t let a few bad apples spoil this critical support for all of us. We are DROWNING out here!!!

CommentID: 227487