We are in the dead zone at the moment. The regular school year is over. Summer school doesn't start til next week. Kids who are disabled often go to school year round, Feisty Pants included. ( A great opportunity I think should be offered to most kids.) So, since we are in the summer doldrums, we do what most other parents of feisty ones do and try to cram in all our appointments and errands and what-not into these two weeks or the other three week break at the end of summer. To that end, today was our second trip to Syracuse this week. A colossal waste of time, if you ask me, but the Universe did not ask. So we crawled out of our comfy house waaay too early and went to hear one more doctor look worried and try not to say she did not have a frigging clue what to tell me.
Sigh, it's so frustrating. For the doctors, for Feisty Pants, and for cranky parents who, frankly, would rather NOT be shlepping to freaking Timbuktu for no damn good reason. I don't mind the schlepping, if it produces results. We used to take Feisty Pants to Philly twice a year. It took a whole week, no one got any real sleep. (Try to imagine your entire family, sleeping and working in shifts trying to live in ONE room for a week) BUT. It did mean that FP got the coordinated care she needed and did NOT end up in the hospital for about six months. And then we did the trip again. But, New York, who seems to be trying to starve the care of the disabled, will not let us take her to Philly anymore. I am NOT kidding. Early Intervention and specialty care are literally being slowly starved of funds. Those involved in making the decision to do that while they trumpet New York's tax breaks and budget surpluses on tv while claiming poverty when it comes to schools and health care for the disabled deserve a special place in hell. And it does NOT make any good sense money wise. It was cheaper to take her to Philly twice a year than it is to pay for ONE hospital stay. We are now up to three or four hospital stays a year. They are paying for four years worth of care every year to save a few cents on the dollar on an asinine fee quibble with the right place.
The state even recognizes that Feisty Pants does not have a lot of options. They stated that there was ONE ( a whole whopping ONE) hospital in New York state capable of handling her care. And we tried that hospital. They made several recommendations but insisted on a sleep study before attempting anything with FP. Then failed to schedule said study. Then, when we called repeatedly, apologized and said it would be scheduled. It wasn't. Then they stopped returning our calls altogether. They even did NOT return a call to Feisty Pants' pediatrician when he called. (Some professional courtesy.) I suspect, but do not know for certain, that it's because we turned down their one recommendation that would have been very lucrative to them.
So, now we are stuck returning to a place that does not want to admit they can't really handle her. But knows they cannot really. And I know they cannot really. And we all smile and shake hands and try to muddle through best as we can. And they grimace and say "We really cannot provide the kind of coordinated care we would like to offer her, but we are way too small." And the state says "continuity of coordinated care would be nice, but isn't really necessary." Right wing pundits say, "America's health care does not need changing. We have the best health care in the world!"
And I say, "What the f%*# good does having any health care system do if the people who need it are not allowed anywhere near it?!?"