As an Arc chapter, we are incredibly disappointed to see family input disregarded in the latest proposed regulations regarding the ability of families to make-up or reschedule nursing care for more than 16 hours/day.  This seems an unnecessary hurdle that places an undue burden on families and incredibly vulnerable individuals in need of nursing supports.  

Why is the proposal such a burden for families?  If an individual is authorized to receive 16 daily hours of nursing care, they need 16 daily hours of nursing care.  If on any day that care cannot be provided by a nurse, the duties of nursing fall to the primary caregivers, usually parents.  It is obvious that if a parent suddenly loses a planned support, they would have to rearrange their daily life, including sleep and work, to personally step in and provide care.  That parent is then drained and stretched, often emotionally, physically, and financially.  If there is another day within the week when the nurse could make-up some or all of those 16 hours thereby allowing the caregiver the opportunity to recover the lost productivity time, that seems like a clear and simple way to help support individuals in successfully living in their community. 

Not two years ago Virginia reached a 10 year legal settlement with the Department of Justice over our systematic failure to provide supports to individuals in the least restrictive environment as well as our failure to make community-based supports adequate enough to deter unnecessary institutionalization.  This proposal flies in the face of that finding and once again forces individuals in the community to choose institutionalization or a lack of the services they need in their homes.

The solution is clear and simple.  Allow families to make up nursing hours within a given week as they see appropriate.  Authorize nursing hours on a weekly basis to allow flexibility for changes in schedules.