I was watching a news program the other day and saw a segment where the mother of a tiny baby, who had a severe heart problem, was fighting with Medicaid to have heart surgery done for her baby at Boston Children's hospital. She was trying to get Medicaid to pay for transportation there and to receive approval to have the surgery done outside her state. At no time, was there mention of the state's program for childen with special needs. I was puzzled becasue this is where the mother should have been putting her energy, not Medicaid. Each state has a program for chidlren with special needs. I have listed these, state by state, in three of my books: 101 Ways To The Best Medical Care, Raising a Child with a Neuromuscular Disorder, and Grandparenting a Child with Special Needs.
Unfortunately, doctors these days do not always refer parents to these programs. This should be done right after a baby is born, so that hospital bills can be covered, if necessary, and arrangements made for the best possible care. Yes, parents often have to be very assertive to get through the bureaucratic maze, but the involved doctors should guide the way. I have done this countless times for patients and made many calls to the directors of state programs.
In the past, both Southwest Airlines and American Airlines have been willing to provide transportation for medical reasons, if a letter was sent by a child's physician. I have also done this many times and it is possible that these programs still exist. At least this is worth investigating.