Although Medicaid is a joint federal and state run program it is run extremely ineffectively. If an individual with an unchanging or degrading disease/condition needs to transfer states one must cancel and reapply for Medicaid. On average states are behind in processing application by 2-3 months. You can not apply to a new state until you are a resident and have cancelled Medicaid in the previous state. Medicaid will retroactively cover costs for 3 months to bridge this gap. The application process is intense as the justification for the need for Medicaid needs to be ensured by the state. For individuals with unchanging or degrading conditions Medicaid should be seamlessly transferable state to state alleviating some of the burden from the care giver. Certain conditions should maintain Medicaid without a reapplication/cancellation process from state to state. It is a redundant unnecessary policy.
In addition, for families with medically complex adults or children private duty nursing hours are allotted on a case by case basis. The states does not mandate what portion of the state pay goes to the nurse. The hourly rate is meant to be divided among the agency and the nurse. I am happy to see competition among agencies however too many times agencies take advantage of the state hourly and take the lions share while providing subpar training/care. Many times the nurse would/could make more without the agencies involvement. As families with medically complex children we have to work with the agency as an unnecessary middle man. This is an unfortunate and unnecessary burden as the agencies are too distant to care about the quality of nursing they provide to these children. Cut out the agency and families regain the autonomy to hire whom they deem appropriate for their child. There is no one who knows a medically complex child better than their own family.