• Children who receive 16 hours of PDN care daily (based on your assessment tool and points system) are typically those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following: 
  
  (5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  I would argue that they are the very children/families who need it the most.  I realize that the options for us now when shifts are missed is to use ‘respite’ hours – but that hardly seems like the intent for respite hours.  (we have had situations where a night nurse has taken ill and had to cancel at the last minute and no replacement nurse could be secured.  Our day nurse for the following day would oftentimes be willing to work a longer shift – usually coming in earlier to give the exhausted parents a break – but this would result in us using more than our allotted 16 hours per day – thus forcing us to use ‘respite’.  Seems terribly wrong that it’s OK for us to miss a shift one day, but not be allowed to make up even a small number of those missed hours the following day – simply because it puts us over the allotted 16 hours per day.)

• My second area of concern is around the restrictions of the daily allotment of hours.  I completely support and agree with the number of hours required for a child based on the point system currently being used.  However, giving families the flexibility to use these hours in a weekly allotment versus a daily allotment would provide significant benefit to families.  My request is to allocate hours to cases on a weekly basis versus a daily basis.  This would allow families to have more flexibility with their hours and use them in a manner that best supports the needs of their child and family.  For example, many families need additional hours during the week when doctor’s appointments, school activities and other responsibilities require more care for their child.  Allowing a family to take more hours during the week and less on the weekend – still not going over the allotted average of 16 hrs/day – 16 hrs x 7 days = 112 hrs.  THIS WOULD NOT COST THE PROGRAM ANY ADDITIONAL MONEY but would give families a tremendous amount of flexibility and allow for the type of nursing coverage that best suits their needs.  While current regulation 12 VAC30-120-90 specifically states the limitation of hours beyond 16 per day, this needs to be re-evaluated as at least one other state (Maryland) has done.  I am also aware of at least one other Medicaid waiver in Virginia that already allows for more than 16 hours per day without requiring respite hours.  I urge the Technology Assisted Waiver to follow suit.

Finally, I am very disappointed that these updated regulations were created without any input from the families whose children are on the waiver.  I would have expected an opportunity to provide input BEFORE something was posted for public comment.  While I understand we have the opportunity to provide our input via this method, it seems odd to me that families who are directly impacted by these changes are afforded the same avenues for comment as the general public.  The next time regulations are being evaluated, you need to solicit recommendations from those who are utilizing the waiver much like nursing agencies were included or consulted in this process.  Why should one group be included and another excluded?  The perception that families don’t have valued ideas or that the ideas of others are more highly valued is insulting.