Josh

Josh pages Josh facts: things we've learned about Josh Josh log: a record of Josh-related events 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 2008-01-31 Josh's IEP at Jordan (draft) - PDF, 7 pages, ~3.5 MB 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 Josh information for care providers (sitters, etc.): probably rather outdated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

Yarrrrrr!
Tis the Dread Pirate Josh!

Josh (born 1992-12-12) is the oldest of Sandy's non-adult children. He is autistic, and currently does not use verbal communication (except apparently at school, where he is usually able to write and speak mostly-rote responses on request).

Josh is basically completely non-verbal and extremely non-communicative. He is very healthy, though, and quite clever, dextrous, and strong. Given all that, he has always been a little difficult to control -- but until recently, he was generally happy, so it wasn't as much of a problem. He has also gotten much bigger in the past 2 years and is now adult-sized (larger than Sandy).

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.

What he doesn't seem to be able to do:

• signal by pointing at what he wants, or holding up an object to request help with it
• planning for the future (e.g. he knows how to use a key to unlock a door, but he has never been known to hide a key for later use when nobody is watching; he lives very much in the present at all times)

recent events

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 (Mr. Ingram) 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 Living Situation, below.

news

• 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

Living Situation

as of 2008-04-18 We're convinced at this point that he needs to be in a different home, for the following reasons:

why away from home?

• We can't reliably prevent him from running away and possibly getting into serious danger. Even so, we have to keep the house tightly locked down when he is here, which is unpleasant and interferes with our activities. We aren't equipped to run a minimum-security prison.
• Josh's bedroom is also the TV room because there isn't any other place to put either of those two things; this frequently causes problems in the evenings when we want to watch shows which aren't suitable for the younger kids, but Josh wants to go to bed. This is one of the major causes of his evening tantrums, which often lead to sleep-deprivation for the grownups (especially Sandy and me).
• There are conflicts over space (he seems to need a lot of it, and doesn't like certain activities going on in "his" space).
• The younger kids feel very threatened by him (and resent having their books and other small items randomly destroyed by Josh).
• We don't have the energy, focus, or training to deal properly with his needs. We already have difficulty organizing our own lives; throwing Josh into the mix makes things even more chaotic, and Josh is someone who needs order and regularity.
• Josh's presence makes it difficult for me to keep up with paying work (I do independent computer consulting); I have had to neglect my existing clients and avoid taking on new work. (It also makes getting a regular job pretty much out of the question, unless I were to find an unusually tolerant employer.) This is causing cashflow problems, to say the least.

Josh's brothers (Benjamin and Zander) need their home to be free of the randomly (though not maliciously) destructive presence of an older brother who, though physically adult-size, cannot dependably be communicated with and does not respect others' property. They need to be able to leave a favorite book on a table without worrying that Josh will see a small tear in one page and feel compelled to tug at it (and then the next, and the next), until the entire book is in shreds. They need to be able to be at home without worrying that Josh will suddenly get in a bad mood and start hitting them.

We, the adults in the house (Sandy, Nick, and Sandy's eldest son Mel), need to be free of having to monitor Josh constantly throughout the day whenever he is home -- to keep his juice cup filled, to make sure he isn't hurting someone, to make sure he isn't carelessly destroying something, to make sure he isn't escaping. We need to not have to worry that any yelling or loud/unusual sounds -- or even unusual quiet -- aren't the signs of a potential Josh-disaster.

why a group home?

Josh needs an environment which is less chaotic -- more predictable and less crowded -- than his current home. He needs to be in the care of people who have training in dealing with the daily-life issues which are involved when caring for someone with autism, and who have the energy and focus to apply that training appropriately for Josh's needs.

what sort of group home?

A quality group home in a non-urban setting with a small number of residents per unit would be best for Josh; he does best when he has enough space and not too many people around him. He might do especially well in a farm setting, where simple tasks requiring physical strength may be something which he would enjoy being involved with. (He might also do fine in an urban setting, but he would need to be watched carefully for signs of being disturbed by crowding, city noises, or claustrophobia. Either way, keeping him busy with mentally- and physically-engaging activities is crucial.)

what we've done so far

We are currently seeking a group home for Josh. We have an application in with GHA in Albemarle, NC (when last heard from, they were supposed to get back with us in January). He is also on the wait-list for a small group home in Carrboro (Gaitway, operated by ASNC) (my extended answers for that application are here) and we have also applied for the therapeutic respite program via PATH at the Murdoch Center in Butner; they are expecting to make a decision on April 23 (2008) and inform us by the end of the next day.

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?)