Josh

Josh pages Josh facts: things we've learned about Josh Josh log: a record of Josh-related events Josh videos: the good, the bad, and the ugly Josh Medicaid: finally approved, after 6 months of effort -- but now we don't know what services we can get Josh and The System: the ongoing story of our attempts to get supportive services for Josh Josh paperwork: Josh release form: permission for various entities to discuss Josh with each other 2008-12-05 Josh's December 2008 IEP (PDF, 19 pages, 67 KB) 1998-10-05 1998 official diagnosis, plus a school evaluation (PDF, 5 pages, ~2.4 MB) view just the diagnosis Josh category with a few things in it (photos etc.) Josh information for care providers (sitters, etc.): probably rather outdated

Overview

File:Josh at NCML&S 2009July18-02.adj.jpg

Josh at the NC Museum of Life and Science, July 2009

Josh (born 1992-12-12) is the oldest of Sandy's non-adult children. He is autistic. He is generally unable to communicate, even using hand-gestures (pointing, touching object, holding up object).

He is very healthy, though, and quite clever, dextrous, and strong. Given all that, he has always been a little difficult to control -- but he was generally happy as a child, so it wasn't as much of a problem. Since hitting adolescence in 2007 or so he has gotten much bigger and stronger; he is now larger than Sandy, and able to resist all but the most strenuous and determined efforts to force him physically.

Josh is also unusually interactive for an autistic person; he smiles, gives eye contact, laughs, and plays possum sometimes when he knows he has to do something but doesn't want to; his main issue seems to be with communication.

For more, see:

• Josh facts: abilities and inabilities
• Josh's behavioral issues
• Why Josh needs a group home

notes

• Need to reorganize the facts, behavior, and group home pages; some overlap and some missing areas.
• Also reorganize News and Status sections.
• Need to note newish problem behaviors: leaving fridge door open, crying in middle of night when he loses member of either of his current Groups.

status

2009-08-07 Got the DMA-5045 filled out this morning, as well as the FL-2 form and medical records it requires; now I just need to finish filling out the application, scan everything for our records, and send it in. Tomorrow's mail, perhaps?

2009-08-05 Josh has an appointment for a psych consultation with this guy on August 21. This is in part because Josh is refusing to go out with his new worker, so she either needs to be giving him some communication therapy (for which she would need at least a plan, hopefully some materials) or else we need to figure out why Josh won't let us get him dressed so she can take him out. I could force the issue the same way we did with getting him to school (see 5/21, below), but I don't want to set it up as something for him to fight (oppositional behavior).

• Also, we found out that if we get a physician to sign a DMA-5045 stating that Josh needs out-of-home care lasting more than 12 months, then Medicaid will look only at Josh's income ($0) rather than Sandy's -- and he should thus definitely qualify for Medicaid indefinitely. Currently trying to make that appointment.

2009-05-21 We seem to have found the way around this: shove Josh out to the car in his underwear, drive him to school, and get him dressed in the parking lot. Both times I have done this (see 2009-05-18), he became passive or even cooperative as soon as he was out the door, and the second time (this past Monday) he put on his socks, pants, etc. as requested and got out of the car without a fight. --Woozle 13:59, 21 May 2009 (UTC)

2009-05-12 For the past 2 days, Josh has adamantly refused to get dressed for school, so we've had to keep him at home. This has messed up our lives even more than usual, and we're desperately trying to get him into any other living situation, even if it isn't ideal.

In 2007-8 the effects of puberty (mainly restlessness, I think) have combined with a very poorly-managed transition from middle school to high school (his first year at Jordan) resulted in a lot of acting out both at home and at school. He has long been known for hitting smaller kids when he wasn't happy, but he has apparently graduated to larger people (including Sandy, his older brother Mel, and me) when he is sufficiently angry or frustrated, and was having spells where he cried like he was being tortured and would go around stomping and hitting the walls of the house (and sometimes windows and mirrors, which is worrisome when it happens -- though mostly he avoids hitting anything delicate). See this video for an example (he had many episodes like this when he wasn't being taken out anywhere over the summer).

A worker (Willie) began taking Josh out several times a week over the summer of 2008, and Josh has calmed down a great deal since then (and especially since school started back up) -- though he still becomes unhappy on weekends, when there is nobody available to interact with him.

We have become convinced that Josh would be happier living elsewhere, and indeed that it has become necessary for his safety; see /group home.

news

• 2009-09-01 Behavior Plan for Josh Smith: has good suggestions in a few places, but doesn't always have its facts straight
• 2009-03-31 webmail to David Price re the Group Homes Catch-22
• 2009-03-19 comments to ASNC
• 2009-02-17 Durham Center complaint response: Ms. Sved upholds the reduction in hours, with some logic which doesn't make sense to me.
• 2009-01-27 Josh's service hours are reduced yet again (the first time was budgetary, but this time they're citing some bureaucratic gobbledlygook which I read as "you're not using the hours appropriately")
• 2008-08-30: Josh's Medicaid was finally approved -- and the goalposts move yet again:
  • The residential services we thought we had been told he would qualify for once he had Medicaid actually require CAP. We've been told it's very likely Josh will receive CAP when the next batch of slots arrive, which is supposed to be in November.
  • Josh supposedly qualifies for a much wider range of services under Medicaid, but we don't yet know what those services are or how to get them. Repeated inquiries to various people have not clarified the situation, and he is still not receiving any more services than he was before Medicaid.
• We have an application in with GHA Inc. in Albemarle, NC (east of Charlotte); they have him in a waiting pool, but can't make any kind of estimate as to when a spot is likely to open up.
• We are looking for other group homes to apply to, but at this point do not know where to look
• 2008-08-25: Mr. Ingram of Coordinated Health Services has been taking Josh out several times a week for a couple of weeks now, and it has been going well. Josh started school on 8/25 singing happily, and Mr. Ingram will be taking Josh out some more after he gets home. Stay tuned...
• In the wake of the 6/19 incident, Maxim has stated that they can no longer provide services for Josh due to his occasional need for being physically restrained. Although we found it a bit odd that no attempt was made to find a way around this problem (e.g. have one of us accompany the worker for a few walks, or only work with Josh in the home), we were ultimately able to find a care provider able to provide physical restraint.

  Maxim added the following note to this page on 2008-08-25:

  On behalf on Maxim Healthcare Services, I wanted to state that while we really enjoyed working with Josh's family, our non-restraint policy prevented us from being able to continue care for him. We wish Josh and his family the very best in the near future. Nick and Sandy never give up hope. Thanks

  We thank the folks at Maxim, and Tiffany in particular, for all their work trying to set up proper care for Josh, and we will continue to recommend them to others (as long as physical restraint is not needed).

• Josh's Medicaid was turned down in May, ostensibly because we hadn't provided some information which we had actually provided, but it was later determined that in fact we hadn't applied for the right thing.
• Josh was turned down on 2008-04-24 as unsuitable (not enough of a problem, apparently) for the PATH program
• 2008-05-21 webmail to Social Security trying to get an official copy of them turning Josh down for benefits because of Sandy's savings (I don't think we ever actually got any paperwork on this); we may need this in order to get Medicaid for Josh, which would be necessary for a group home.
• 2008-05-16 (Wed) Tiffany at Maxim totally came through for us -- the red tape ensnared two different staffers she had found to work with Josh, so she started working with him herself today. (5/21: she worked with him on Saturday too, and tried to work with him on Sunday but he wanted to sleep. Tuesday she brought over a staffer to work with him, and Rachel was there too, and it was a bit of a mess because there were too many people. Today the staffer is going to work with Josh mainly by herself, so things should be calmer. In any case, Josh's wall-banging has been greatly reduced since Friday -- I think he might have had one episode Sunday evening.)
• 2008-05-13 (Tue) Ok, it was just a miscommunication... I was overeager to hear that things were starting. The original DT person had a child-related crisis and had to postpone for awhile, but we met a new person today and she is planning to start working with Josh on Thursday (I could mention names but I don't know how the people involved feel about that... except I do know I can say that Tiffany at Maxim has been really terrific and helpful).

  Once this happens, whenever it happens, things should start to get a little bit easier, as we will be able to breathe a bit longer in the afternoons instead of having to batten down the hatches promptly at 3pm every day. Hopefully this will lead to more progress on the longer-term solutions, which involve Medicaid and CAP-MR/DD services.

• 2008-05-08 (Thu) We cleared all the hurdles and were told Josh's developmental therapy could start Tuesday... and then the DT person wasn't available until Thursday (today), but it could start then... and then the DT person never got back to us about logistics, and Thursday has come and gone and we still don't have any effing services. I am trying not to be upset about this. I'm trying really hard.
• 2008-04-26 The Durham Center just sent us a notice reducing Josh's developmental therapy hours from 20/week to 15/week -- before he has even started receiving the therapy, despite having been in their system for about 2 months. In my view, he's due a backlog of about 4 years of DT due to the Durham Center's unexplained dropping of his case back near the end of 2003. I'm fighting the temptation to send Terry Ames an email with a copy of the letter and adding only "WTF????"
• 2008-04-19 video (6 min 23 sec) of one of Josh's temper tantrums -- he's basically going around the house crying like he was being tortured, occasionally hitting the walls, doors, TV, windows, etc. (but notice how he doesn't hit the glass picture frame or any of the things hanging on the wall, and the fact that he also calmly turns the TV off and on in the middle of all this) and trying all the doorknobs to the outside. He wants to go places and do things, but if we let him outside he'll eventually head off across town (which would not be good).

Needs

Josh's primary need is to be in a group home.

Some additional needs, which could be addressed properly in such an environment, are:

Medical Care

We often get the impression that Josh's acting out is due to physical pain, possibly just a headache or possibly dental. We have absolutely no way of determining this. I used to give him neck-massages which seemed to calm him down, but this could have been purely because it feels nice to have a neck-massage whether or not you have a headache. We also can't see any visible indication of tooth problems, but it is very hard to get him to open his mouth; even brushing his teeth regularly is a battle.

Obviously it would help if he could communicate when something was hurting, but I don't know if he can be trained to do this at this point. I've heard that there are "tricks" one can do to get medical clues from a non-communicative person; Josh really needs to be regularly looked at by someone familiar with that sort of thing.

Life Skills

The most important life-skill Josh could use at this point would be some way to indicate what he wants. His current methods of indicating that he wants something include:

• "hovering" around the office (to get our attention)
• whacking one or both of his brothers (so someone will get up and notice that his juice is empty, or other things; sometimes we can't figure it out)
• random vocalizations (we encourage this one over the others, as it is more communicative in nature)

There are a variety of methods Josh could use to indicate what he needs without having to use verbalizations (e.g. pointing, or taking someone by the shoulder and leading them); he seems unable to do any of them, though perhaps training could help with this. At school and other places, he often is given picture-cards as a way of informing him of the day's schedule; I don't know if anyone has made a serious effort to get Josh to indicate choices using similar cards. (2006-06-25 Update: Yes. Read this.)

Completing his toilet-training would also be helpful. He seems to have grasped the concept of wiping, but he still expects others to do it for him if they are around (and when they are not around, he tends to use the entire roll of toilet paper and all the moist-wipes).

Notes

Josh sometimes displays surprising skills and awareness. Just now (2008-01-20) he accidentally knocked over a box of (plastic) Christmas ornaments – and then spontaneously started picking them up and putting them back in the box. He did it very efficiently and thoroughly, even spotting an extra hook on the ground. After that, he apparently started pulling ornaments off the tree and putting them away too, so we had to hide the box... but now we know that he'd probably enjoy helping with that task when we're ready for it.

Later that day, after we made him come in from a walk (in the freezing cold) that wasn't as long as he wanted, he attacked the kids and me -- punching me in the shoulder and slapping me in the face.

Links of Convenience

• Medicaid and Health Choice Applications
• After School program
• The Arc of Durham: respite care
• The Arc of North Carolina
• The Durham Center
• local Special Olympics schedule
• Benefits For Children With Disabilities (Social Security Administration): can't get anything if you've got over $2000 of liquifiable assets (e.g. savings, stocks); real-estate ownership doesn't count towards this total, but debt (e.g. credit cards) doesn't take away from it either. Josh will presumably qualify when he turns 18, but Sandy doesn't qualify (too much in emergency savings) so Josh can't get benefits since he is in her care. (It's not clear what happens if he's declared incompetent as an adult, which I would think would have to happen; does he still fall under Sandy's financial "wing", then?)