Friday, December 19, 2014

New Waiver Business

I decided to apply for a new Medicaid waiver.  I love our current one (ECDC waiver); last year I called a UCP branch (not the one in town, one in a major city--Richmond) and asked if there was anything I should be thinking about for the future, as E grows older.  The answer was yes, the Developmental Disability (DD) waiver.  Basically, it's like ECDC on steroids.

You have to qualify in at least two different categories to apply for the waiver.  I could think of four.  So, I called up the office and asked what I needed to do.  The first thing was to get a psychological evaluation to prove Elena isn't intellectually disabled.  No problem, right?

WRONG.  First of all, I only had 45 calendar days to get the report in.  I needed the report before I could get a screening.  I called the school psychologist--she took 5 days to get back to me, and then said they didn't do that (they don't--unless you already have a psych eval on file as a part of your kids' IEP, they won't do it).  I called twenty psychologists in town; most of them didn't do this.  Oh, and by the way, psychological evaluations for exclusion are never covered by insurance.  For the psychologists that would do the screening, prices were $350 and up.

Well, I got one--but I couldn't get one before the screening appointment, which I had made at the Richmond office on the same day as two other appointments for E (I didn't want to pull E out of school more than once).  I was allowed to do the screening in good faith that E wouldn't be labeled intellectually disabled (excludes from the DD waiver).

The screening went well--E actually qualified in five out of six categories for the waiver.

We had E's psych eval--it's basically the WISC IQ test and a report.  I faxed it over, and now we're just going through the hoops to get on the DD waiver wait list.  Which is about 5 years long.  I figure that's okay, maybe we'll have it when she gets to middle/high school.

I got a call from the psychologist, Dr. Patrick.  He said if I was willing, would I be interested in coming in and talking about Elena's test results; he said he might have some tricks that would help us deal with frustrations as E gets older.  ARE YOU KIDDING?  Who wouldn't?

That appointment was this week.  In a nutshell, they said that Elena is basically a verbal genius.  And that given her language skills are so strong, one would assume that other skills are strong (true assumption).  UNTRUE in real life.  Her other scores--particularly spatial relations, problem solving, ordering--are on the low end of average.  (I'll write the official psych categories once I find the report again).  This IQ score spread between her verbal and other categories--is seen in less than a half of a percent in her peer population.

But it's relatively common in spastic diplegics.

The difference in these skills indicates Elena has a non verbal learning disability.  I don't know much about this, but schools do; I'll be giving them this report addendum once I get it.  The psychologists believe that once a few NVLD tricks are employed, E will make rapid progress in her deficient areas.

I said that was great…but what can I do at home?  I gave some examples, such as:

1) Brushing teeth. For a very long while, she would fight us all the time b/c she insisted on squeezing the tube from the middle instead from the bottom.  I showed her tons of time, she just would go back to her way and scream that there wasn't any toothpaste.  For MONTHS.
Answer:  Are you normally trying to get somewhere during this teeth brushing event?  Yes (school).  They said I can't be a teacher and a time manager.  I have to pick one.  If I'm teaching her, time doesn't matter, and we do it calmly and work it out.  If I'm a time manager--just help her with the toothpaste, b/c she won't get the lesson.
2) Brushing hair.  Elena loves her long blond hair, but she can't brush it well.  I've taught her how to start at the bottom, move up, and then brush down from the top, as well as from the back, where you hold the brush behind you and go down from there.  Both psychologists said at the same time "she doesn't know where the brush is" in relation to her head.  Makes sense, b/c she basically tangles everything up in the back.  Again, the solution (besides cutting her hair) is to sit down, teach her, mirror each other, etc. so she can learn a different way.
3) Time management.  I tell her she has 40 minutes to do four things (get dressed, brush teeth, come downstairs, brush hair).  We are always running late, we are always waiting for her.  She knows how to do these things (minus the hair), she knows how to tell time, she knows she takes longer but still won't get started and it's always a struggle.  Again, the psychs say in unison, "tell her to do one thing.  Then when that's done, tell her to do another one thing."

This is all pretty new around here, so I'm reading up on NVLD and dividing my time between teacher and time manager.  That was a good piece of advice, as I have seen the frustration level decrease since that change.

Hopefully school will help…and there's a chance that she'll receive OT, which would be great.  If not, we may need to seek OT privately.


Maggie said...

I worked with you for years and you'd probably peg me as high functioning, but I squeeze the toothpaste from the middle too. I just smoosh it all up together occasionally so it's there when I need it. There are little plastic smooshers frequently sold as school fundraisers that do the trick and keep it done, st least for a while.

Kim said...

So interesting. I think this describes D quite a bit too. I would love to hear more about some of the tricks they recommend for school when you have them. Sounds like they could be really helpful for us as we look at his elementary school IEP.

AZ Chapman said...

Amy I have both CP and NVLD feel free to email me or fb me with questions

Patty said...

I had my daughter with SDCP do the testing through our children's hospital so insurance would pay for it. She basically did great on anything verbal, reading, etc but scored in the developmental disability range for her overall IQ. This is not my daughter. The reason he told me for this was that everything that required small motor skills and doing something quickly she did terrible on, and it is an overall score. I was so mad. I seriously could not believe that they did not have accommodations for a kid with CP. It's not like she is the first one ever - and they had nothing. The report put her in the range of kids who are mentally retarded. Now school testing she just tested totally at grade level for reading, math, writing persuasive papers (with a scribe to write for her), and she is not in the least bit developmentally delayed. Its kindof crazy!