I am a Registered Nurse who has worked in pediatrics (primarily Home Health) for more than 20 years. “In my profession I have worked with many families who participate in various Medicaid Waiver programs, including the Technology-Assisted Medicaid Waiver. Obviously, the needs of the children and their families who are on these programs are significant. The quality of life at home as well as the ability to attend a school setting for many of these children is directly dependent on the daily schedules worked by their home nurses.”

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among 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. 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 have been blessed to know and work with one VERY inspirational family for 13 years.  I have witnessed the exhaustion of these amazing parents first hand when relieving them after “their shift”.  When a nurse trained in working with medically fragile children misses a shift, the parent’s then “cover” that shift and go on with life as usual.  It is not taken into account however that they may have had consecutive missed shifts.  I question why a skilled nurse has a set number of hours they may work but a parent (with no skilled training) has no limit on the number of hours they care for their child before putting their child at risk. Is it really cost effective to put the child at risk of being hospitalized?  Why not allow the family flexibility/choice in how they use their allocated hours?

Thank you for taking the time to read comments posted on this very important subject!!!!!