Stefanie, a police detective and Kyle Rough, a police officer have 18 month old Mason, who has a rare genetic disorder — Chromosome 7 deletion. His condition requires a 24 hour supervision and care. Previously, Mason was able to receive 60 hours of care from two nurses, however both nurses have left their position for different opportunities and higher pay. Now only 30 of Mason’s hours are filled, which presents a major challenge to his parents, who also have a 4 year old daughter.
“The hardest thing is finding help for us, the biggest thing is finding nursing care.” Stefanie said, “Mason gets sick very easily, we spent many weeks in the hospital with a total of 9 times being hospitalized so far, the help of a nurse will help us keep him out of the hospital because they’re more trained and qualified.”
The last year they’ve only filled 50% of that on average. The struggle is finding full day shift coverage. And the only option is at home due to his developmental delays, susceptibility to colds, and viruses, he does not qualify for day-care or child care system. Throughout the night a typical baby may sleep through the night but mason requires feeds every 4 hours.
The Rough’s past nurse, Crystal Brown was a registered nurse who cared for Mason, and despite the low pay worked with the family until she moved back to her home state because she enjoyed the job and the family.
“Nurses that are qualified and have a degree work a lot for little pay, I’ve watched Stafanie called numerous places looking for a nurse and no one wants to do it because of the pay. They can’t find a licensed piadietic nurse and I even considered training to become one to help out.” Crystal said.
Mason has 7 weekley at-home therapy sessions that consists of physical, speech, occupational, and vision. Those help Mason build muscle skills like sitting up, rolling over, head and neck control, along with oral feds, and motor skills.
While Mason’s parents each have private health care, neither of their insurance policies cover home nursing.
“Mason is authorized for 100 hours per week of RN nursing services through South Carolina’s Medicaid MCC waiver, the state’s current Medicaid reimbursement rates are so low that it’s a challenge to find and retain nurses who are qualified to manage complex cases like Mason’s. In fact, many home health agencies in the state are closing their doors because of this issue.” said Sarah Stewart, Vice President of Regan communication group.
The medicaid waivers are supplement services, Mason claifies for the Medically Complex Children’s Waiver (MCC). The MCC is a statewide program to serve children from birth to age 18 who meet either Nursing Facility or Intermediate Care Facility-Intellectually Disabled level of care and medical criteria. However the reimbursement rates according to the state medicaid if parents want additional help they must do another referral for extra support that is not guaranteed.
The Rough family needs help finding a nurse or licensed pediatric nurse for their 18 month old baby, Mason. Perfectly the day time shift needs to be fulfilled, any nurses looking for work are encouraged to reach out.
