President Obama: Make Colorado's Parent CNA Program for the Children's HCBS Waiver a Federal Med...

My son Miles has a rare disease called Menkes. He requires 24 hour a day nursing care and is covered by Medicaid due to his life limiting illness. We are fortunate enough to live in the state of Colorado where they have a program to help families like us. The state will reimburse health care providers who hire parents of children with life limiting illnesses and train them to become a Certified Nurses Assistant. My wife took the courses, passed the tests and is now employed by a health care provider to give care to my son so an outside nurse doesn't have to and my wife doesn't need to get another job. Some states see caring for your child in any form as "paternal duties" but I can tell you there is nothing paternal about G-Tubes, suction catheters and emergency seizure medication administering. My wife replacing a skilled Registered Nurse in our home saves the Medicaid system approximately $40,000 annually! It is not only cost efficient but the right thing to do for a family already dealing with such a tough circumstance. In my heart, I feel Miles has out lived expectations of his disease partially due to the paternal love he feels more than other children, in other states whose parents have to find jobs during such a tough situation and have a stranger come in to care for their child.
Thank you for your time,
Jonathan V. Taylor
Denver, Colorado