Mary is a 9-year-old child with significant medical concerns and physical disabilities. She has normal cognitive ability. She needs round the clock nursing care at home and at school. Medicaid has approved round the clock nursing for all out of school hours. She is cared for by her single mother and has no siblings. Mom works full time to support herself and Mary. Due to the critical shortage of nurses, mom often has to provide Mary’s nursing care because no nurse is available. This often means getting very little sleep at night.
Eventually mom can no longer manage on her own and applies to have Mary admitted to a nursing home. Many community agencies come together to try and support Mary and her mother. The people on this team have differing views of what should happen. No one can guarantee mom that she will receive adequate nursing supports at home because of the nursing shortage. Funding for this service is not the issue.
John is a 54-year-old man with mental retardation. He is generally healthy and has a job at a local restaurant. He lives in a family home and receives support from the local area agency. John has a guardian.
John fell and broke his hip. He was admitted to the local hospital and it was determined that he needed surgery. During the operation, the doctor determined that the hip socket needed to be replaced and he did not have the correct artificial hip on hand. He wrote in his notes that John was a 54-year-old man with downs syndrome (this was not his diagnosis) and since his life expectancy was short, hip replacement was not recommended. John left the hospital in a wheelchair, unable to walk and had to move into a nursing home for rehabilitation.
Mr. and Mrs. Q. gave birth to their third child. The baby was born 2 months premature and was immediately admitted to the Neonatal Intensive Care Unit (NICU). He was placed on life supports, as he was unable to breath on his own. The baby had multiple disabilities including cerebral palsy, seizures, and possible brain damage. The doctors could not give Mr. and Mrs. Q a prognosis for their baby, as it was too early to tell if the baby would live and, if he did live, what functional capacity he would develop. His brain damage and cerebral palsy could be mild or severe. He may never walk, talk or eat on his own. The baby will need extensive medical care for the foreseeable future.
Mr. and Mrs. Q do not feel they are ready to care for a child with such significant disabilities. They worry about the effect on their other two children. They worry about the emotional and financial toll on their family.