As the mother of a child with significant medical needs, I understand the vital importance nursing services provide not only to the individual requiring care, but also to the family members in their home.  It is important to first acknowledge that caring for an individual with complicated needs in their home is about three times less expensive than caring for an individual in an institution or nursing home.  Without proper support, individuals who receive services under the Technology Waiver would be forced to live in a nursing home or other institution. 

Nursing services provide necessary care to the individual receiving services under the Technology Waiver; but they also provide an opportunity for family members to work, care for other children, participate in community activities - and save the state money by preventing the placement of medically-needy individuals in nursing homes and preventing families from having to seek additional financial support from other state agencies. 

The proposed language as it relates to nursing hours is very stringent and will place unecessary hardships on families.  The current language allows for only 16 hours a day of nursing services (as opposed to a total weekly allotment of hours) and also does not permit families to make up any hours lost when a nurse is not provided during those allotted 16 hours. Most family members caring for an individual who receives Technology Waiver services work, care for other family members (children), and need to sleep.  Individuals receiving nursing services under the Technoloby Waiver most likely require care overnight; therefore, a nurse is necessary overnight.  The restriction of 16 hours per day of nursing will make it difficult for a family member who works shift work, or odd hours (such as 12 or 16 hour shifts);  it makes  it difficult for a single-parent family and it does not allow a family to provide care as they (and/or their doctor) deem necessary for their loved one.  The family and their case manager are the best individuals to decide WHEN nursing services are necessary - not a general rule restricting the use of hours to a specific number of hours per day.  (Imagine the risk that an individual on a ventilator would be placed in if a family member was forced to stay awake overnight because of a missed nursing shift; and then they were unable to make up that sleep the next morning because they were not permitted to make up the lost hours).  We must also remember that the individuals receiving services under the Technology Waiver are not individuals who can be cared for by anyone - they receive nursing services because they require specialized, trained caregivers.

I highly support changing the current language to allow PDN shifts to be allocated on a weekly basis, rather than on a daily basis to allow families the flexibility of scheduling nursing to meet their needs.  In addition, I would suggest allowing missed shifts to be made up within a set time frame (say, 72 hours) to allow families to catch up on lost sleep, make up hours lost at work, etc.  The proposed changes would not result in any additional costs to the program and will allow for better care of individuals within their community.   Thank you.