Wednesday, April 30, 2008

One ticked off mom

I am SO angry. Three years ago our family had the devastating experience of helping a child through a horrific illness. #3 was a normal 2.75 year old, and started having seizures out of the blue. Days progressed into weeks, and she was having hundreds a day. Every 3 to 5 minutes she had another seizure. She ended up being diagnosed with a very rare brain disease that I won't really discuss here, but it required a tremendous surgery. It left her disabled on the left side, and she has fought hard to be the fairly normal kid that she is today.

Two years ago after starting therapy somewhere else to regain her left side, she ended up at Providence Hospital run by the Sisters of Charity - HA. It was a lovely place, but the therapists were having a heck of a time with whatever management issues were going on, and one by one they started to leave. Finding a therapist who helps your child is like finding the perfect hair stylist. If they leave the business, you follow. So as therapists left, children left, but #3 continued to thrive, and we met one of our favorite therapists there: Kathy. Kathy is from New York, and living in the South, and sometimes that is noticeable, but she works #3 to pieces and of all the people who have worked with her, she has done the most for our child.

One Friday out of the blue we get THE LETTER. This letter informed us that Providence Hospital was duplicating the services that other hospitals provided, therefore in 10 days all outpatient children's therapy would be halted. We were encouraged to contact Easter Seals, and the other hospital in the city, and thank you very much. I was outraged. Most of these kids are on some form of Medicaid. Even though my own daughter walks through the door with insurance (two different ones at the time) the remainder is picked up through the TEFRA program designed to help disabled children. Now I am very conservative, but I think this is one heck of a state run program, and will one day help to make our child an amazing tax paying, abled-bodied citizen. Our portion of #3's care at that time would have been thousands each month.

I called legislators who were told that it was a financial move. Well, why wouldn't it be. The hospital ends up eating the care for some of these kids who are only on Medicaid, but let's call it that - not a duplication of services. The reality is that adults who need Physical Therapy need it to recover from surgery, or an accident, or whatever. Kids who need Physical Therapy need it for a LONG time. My daughter's symptoms are stroke like, she needs a lot of care, but at the same time we have gone from not being able to move muscles on the left side, to playing soccer and hating ballet class. She swims on the country club swimteam in the summer (it isn't beautiful, but she can swim the whole length of the pool). She is really an inspiration each day.

Luckily for us, Ms. Kathy went to the other hospital who had the foresight to open a therapy clinic on the NE side about 7 minutes from our house. Meanwhile the people who went to Easter Seal's were screwed when that closed about a month after Providence, and soon another local therapy office closed to children. So children in the capitol city of my smiling faces state had one hospital to provide their care. Unfortunately that hospital planned a million dollar facility for the kids but then couldn't turn a profit, so they closed the NE office, let Ms. Kathy go, and invited all of downtown. Unfortunately because Ms. Kathy was no longer with them, #3 could only get an appointment at 10:00 am for PT, but could keep her 5:00 slot for OT, thankfully speech had been exited at that point. There was no way I could teach school, and then do a 60 mile round trip to pick her up at home, fight rush hour traffic downtown, and then drive back home with a tired 5 y.o who hadn't really had a break all day. Not to mention the fact that 10:00 was in the middle of both her school day, and mine. "Oh well" I was told by the administrator, that is what we can offer you.

So, I took a deep breath, and dug out Ms. Kathy's card from the last year which I thought might have her number on it, and called her. To my extreme pleasure she told me she was gearing up to see children through another clinic that would bill for her. This would mean a local commute, a reasonable time getting to and from therapies, but it would also mean crossing my fingers that her new business would take off and she would add in an OT. So we followed. We haven't regretted it even though we still need OT.

Today, however, the newspaper announces how Providence has finally made a profit, and all I can think of is how many kids were kicked out to fend for themselves. Yes, the hospital has made money and can expand, but how many children weren't lucky enough to get the care they needed because they closed. The article dares to mention the many uninsured children who need care, but they didn't care for the ones they had. How many children are on endless therapy waiting lists still waiting.... These kids are worth it. They may not fit the mold of the perfect child, but they are precious, and they deserve attention. Look at the picture below. Isn't she worth it?

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