I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for their son, missed nursing shifts have a huge, real impact on their lives.

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.