Josh/2008

• 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).