I am 71.  My 39 year old daughter has quadriplegic cerebral palsy, skin breakdown, dysarthria, dysphasia, neurogenic bladder, low vision. She is physically unable to do any ADLs, any IADLs, evacuate a residence in the event of a fire or any emergency, self administer medication, prevent skin breakdowns or see them when they need treatment, and on and on.  She chokes repeatedly during each meal.  

Weekdays she lives in an SRAP supported apartment with the help of (1) a consumer direct attendant who is authorized for 37.5 hours weekly (plus respite hours for my daughter’s unscheduled needs) and who  sleeps overnight in the apartment for 8 hours without pay for 5 nights a week except for the unscheduled respite minutes; (2) a direct support professional during the day who is authorized for 40 hours a week.  On the weekends, I care for her directly for 48 hours, free of charge, and I also do so anytime either of her two paid caregivers take vacation or sick leave.  

Because my daughter is COMPLETELY helpless physically as well as at constant risk medically throughout the day she CANNOT be safely left by herself.  I’m sure Virginia would consider neglect charges against me if I did.  Note the charges brought against the mother and son a few years ago in Woodbridge when their cerebral palsied son/brother died lying on the rug in the family home.

DMAS has not explained what the exceptions to the cap would be, but has indicated it wants to bring waivers services in line with CCC+ criteria.  Those criteria appear quite stringent and do not take into account the fact that waiver recipients have already been found by the state needing care for these hours.  IF there were some inequity it would be on the side of desperately needed CCC+ waiver recipients who may be being denied care they desperately need.  For example I was told that an elderly relative of a friend was denied ccc+ waiver services in spite of dementia and diabetes that is certain to cost him his legs in the next few months.  DMAS needs to stop moving toward  a Dickensian state in Virginia!

This proposed change appears to have been put forward in a sneaky way.  I had heard nothing of this precipitous proposed change until the service facilitator brought it up.  There was a DMAS meeting about EVV for live-ins — pointless and punitive, but apparently required by federal law— but nothing about this 56 hour rule, apparently envisioned as coming into effect in about little over 10 weeks from now!  My daughter’s landlord demands she tell them now if she is going to renew her SRAP lease.  If the cap is imposed and if the “soft” cap exceptions mean  that waiver recipients will only receive hours if they essentially  qualify for hospice then we enter into the lease only to have to break it since to repeat my daughter cannot safely be left by herself and we would not have enough hours to have someone with her in  the apartment weekdays  even taking into account the 7 or 8 “sleeping” hours the overnight aide already provides free of charge!  There does not appear to be anything “soft” about the CCC+ exceptions and using that word  for them in this context appears misleading “spin” tending  to encourage complacency until outcry is too late.  This is all the more true given the silence as to appeal rights and timelines. Families of waiver recipients who currently receive more than 56 hours of attendant services are too tired and beaten down by their responsibilities to carefully monitor the complex waiver program. When I tried to check with the ARC of  Northern Virginia its chatbot was not aware there was any “guidance” imposing such a cap.

So what are the alternatives for my daughter if DMAS were to restrict her to 56 hours weekly?  A group home or sponsored residence? Are these going to be subject to similar strictures.?  If not why not?  Dont see many sponsored residences looking to care for someone like my daughter!  In any event either would be more expensive for the state, not less, than the approximately 80 low wage hours the state is paying for now.  Or there’s always institutionalization, which is the horror and expense the waiver program was designed to avoid.  Or.. my daughter comes home to live with me and at age 71  I add an additional 24 hours to my workload.  This is the time of my life when nature decides I have less, not more, stamina  to cook for, feed, toilet, clothe, unclothe, bathe, medically monitor and treat, take to appointments, manage benefits for, hire attendants or agencies to hire attendants for, encourage and support a 140 pound woman, even with the help of the expensive lift system and lift van the state didn’t pay a penny for?  It would take years from my life and  deprive BOTH the state and my dear daughter of what I have left to offer.  It is also the time when my daughter should be gradually decreasing her dependence on me as my life nears its end, and not forced to live with me til I am precipitously taken away from her and she hangs in limbo while someone decides what should be done with her.

i hope you will not strip the assistance previously granted from people who need it and whose lives depend on it.