Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
Standards Established and Methods Used to Assure High Quality Care [12 VAC 30 ‑ 60]
Action Electronic Visit Verification
Stage Proposed
Comment Period Ended on 3/21/2020
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3/20/20  4:41 pm
Commenter: Stephanie Cox

EVV is impacting my child's health

 Kristina age 11 was born with Prader Willi Syndrome.     Every day that she wakes ;she only has one goal in mind and that is to eat.   She has to be supervised at all times or she sneaks and hoards food.   This is life threatening for a few reasons.  She can over eat and her stomach rupture leading to sudden death,   the sneaking leads to obesity which is still threatening just at  a slower rate, and lastly the  behavior that PWS individuals display can cause them be in really dangerous situations.     Kristina was thriving to have this life altering syndrome because her waiver made sure that she was kept on schedule at all times (which is crucial for her.) She had no opportunities to sneak food and was kept engaged both mentally and physically.   This ensures I could also take care of my other 5 biological children and the basic needs of running a large hold and working as well.  When the EDCD waiver changed to CCC+ it crippled kristina because she lost most of her hours .  She immediately gained wait and her behaviours became aggressive both in school and at home.  She has been in residential placement once so the thought of having to do that again runs through my mind all of the time.  I feel like with EVV I am being forced to make the choice of a residential placement because she is once again declining because I cant keep help.  No one wants to deal with an app that barely works, pay being late because of it.  Most of my attendants have lived paycheck to paycheck and depend on their money being there so its stressful when it's not.   Most local gas stations pay more then what my attendants make so to force an app on them that is intrusive and seldom ever works is only hurting the only person that is supposed to be taking care of and keeping safe.   Kristina is suffering , and I showed ample paperwork to Ben Clines office during the loss of hours to prove that her weight had been steady for YEARS.  She had been doing so well until the waiver was messed with.  Days after I was informed her hours were back the EVV was being shoved on everyone which put us back in the same boat.  I will not be able to keep taking care of my niece in my home if EVV is not removed because of the loss of attendants and the fact that it's making it 10 times harder to find someone now .  I already feel like I am being forced to work because she can not get supervision hours unless I am working.   A child who needs to be supervised like so many more out there whether I am home or out and I can't get the extra hours unless I wear myself out  to ensure she gets the hours vital for her life.   Her health has done a total 360 and if the EDCD waiver had been left alone I have no doubt she would be flourishing right now.  Instead she is falling apart both physically , emotionally,  and mentally.   Please think about our homes for just once and how hard it is already .  EvV is making our home a living nightmare.   I can not be the mother I need to be, if I am so worn out I can barely function.  I cant take care of my household properly if I cant leave her and do laundry , dishes etc.  

CommentID: 80019