I am disappointed to learn that the changes proposed during the public comment period last year regarding the making up of missed shifts for those receiving 16 hours of private duty nursing care per day were not implemented in the final stage of this regulation. 

When the Town Hall Agency Background Document states: ‘In response to comments received during the comment period, the changes being made in the final stage are: (i) the making up of authorized private duty nursing care within the same week is permitted’, it appears on the surface to address the issue.  However, the wording in the updated regulation states the following: (5) The making up or trading of any missed [ scheduled shifts, days or authorized ] hours of care may be done within [ 72 hours the same week (Sunday through Saturday) ] 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.’

  Not only does this change not address the previously made comments, it allows those who could already make up a missed shift within 72 hours to now have a full week to make up their missed shifts. 

While this change from the proposed stage to the final stage may seem minor or inconsequential in its impact, I would argue that omitting the proposed comments from last year is, and has been, a substantial impact to those on the waiver - especially targeting those receiving PDN 16 hours of nursing coverage a day.  Ironically, these are the same children who have been designated as the most severely impacted by their disabilities according to this same system.

As a reminder, the original request was as follows:

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.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I strongly urge you to reconsider including these changes in the final regulation.