Josh/getting services

This is a little history about our attempts to get various social services lined up for Sandy's autistic son Josh. There have been three major phases so far.

Phase I

In roughly 2002-2003, we were able to get Josh signed up with The Durham Center which gave us access to respite care at a greatly reduced cost, through The Arc of Durham. We had one respite person (Kristine) whom the two younger kids were quite fond of (they still talk about her even now, two years later) and who would confirm availability via email. Unfortunately, she went off to go to law school and became unavailable.

Phase II

For awhile, we tried to establish a relationship with some of the other respite workers who were available, but it somehow never seemed to work out. On one notable occasion, we had made arrangements for two overnight sessions so we could go out of town to take care of some urgent business, and then at the last minute it turned out there had been a miscommunication and the controller (?) had only booked us for two days, with one night between them. We had to postpone the trip, which caused a lot of problems later (see 2003-10-16 SvsG Emails, the follow-up, and then 2003-11-25 SvsG Events under "What Happened" – I am pretty sure the trailer had not been hauled off as of 10/16).

At the end of the 2002-3 school year, we heard from various sources that funding for CAP workers was available, and that one of his teachers (with whom he got along well) was interested in doing CAP work with Josh, we started making inquiries about this. (Josh was also changing schools, from Hope Valley to Githens, and this seemed like a good opportunity not to lose track of the Hope Valley folks so as to maximize his available people-resources.)

Things were looking good at first. The Durham Center assigned Josh a caseworker, Alexsandra Manuel (see 2003-08-28 Josh email) who set up a Medicaid eligibility appointment on 9/17 (see 2003-09-15 Josh email). We met with the Durham Center's Medicaid worker, Flora Druid, and found out that all three kids were tentatively qualified for various levels of assistance (see 2003-09-22 Josh email), though we had to find some documentation first and it took several weeks before things started to happen. On 11/4, we heard that Josh had been approved for medicaid, which apparently made him eligible for something called Total Rehab which includes "home speech, occupational, and physical therapy". We were absolutely delighted to hear this, as Josh tends to respond well to one-on-one attention but otherwise tends to regress into non-verbal and non-communicative behaviors. There was also an indication that other services might be available.

And then we heard nothing for over 2 months. I sent an email to Alexsandra on February 15 to ask what was happening.The email bounced. There was no response either from Melissa Bent at the Arc, whom I had cc:ed, nor was there a response to the follow-up email I sent to a couple of "contact us" addresses I found on the Durham Center's web site.

I was very busy at that time dealing with an emerging lawsuit situation as well as trying to keep my online business running. The Durham Center itself, which had been located in a group of buildings at the corner of Roxboro and Lakewood, appeared to have moved somewhere, but their web site still had the old address. We also heard a rumor that they had had a massive computer system crash and lost a lot of client records, and that we would have to re-enroll and go through the whole process again.

Not knowing where they had moved to, we couldn't just stop by the way we had done the first time, however. So, in the absence of any response via email, that left a phone call as the only option.

So what with all that and being highly discouraged after having our hopes brought up, neither of us felt up to making an already difficult phone call into an unknown and possibly hear-tearing situation, and we didn't make any significant progress for about a year.

Phase III

In early 2005, we heard that The Durham Center had a new director (Robin Baker), and that things were improving. After some weeks of working up the nerve and trying to figure out what to say, I emailed Mr. Baker. After a few more weeks with no response, it happened that an online friend volunteered to call TDC and make sure they had received the message; we received a response the next day.

Over the next few days, the following details emerged:

• Josh's case was closed in Februrary
• nobody seems to know why this happened
• nobody seems to know what happened to Alexsandra Manuel
• nobody seems to know why John Lee's phone calls weren't returned
• "Health Choice" would be "happy to try the process again", but it's not clear what this process is
• The Durham Center – or, at least, the part we needed to interact with – had moved to N. Duke Street, Suite 900

We stopped by 2609 N. Duke Street, Suite 900, on 3/1, but were unable to meet with anyone about reopening Josh's case; I emailed Robin Baker about this on 3/7. A week after sending that email, we received a very concerned email from Ellen Holliman at TDC. Ellen was very helpful in trying to straighten out the situation; she attempted to put us in in touch with Carla Alson (2005-03-16 Josh email), but we didn't hear back from anyone until we emailed Ellen on 3/24 to ask, and Ellen managed to get Carla to call Sandy's cellphone the next day. (It was only at this point that we found out that Josh was still eligible for respite care through The Arc of Durham.) We did finally get an email from Carla, and one phone call when we were out, but no more phone calls arrived when we were around to answer them and apparently whatever business needed to be conducted could not be conducted over email, and at some point I lost track of where we were in the process.

Meanwhile, we also heard (somehow) from Melissa Bent that we should contact Kaye Crossland at The Arc of North Carolina (not to be confused with The Arc of Durham); I sent her an email, and got back the inevitable "please call me..." (2005-04-04 Josh email). I explained about phone-phobia and asked if there were any alternative (2005-04-14 Josh email), but received no reply.

Apparently Carla called some time later to check up on our progress; Sandy emailed her back (2005-06-27 Josh email) to explain that we hadn't. A few days later we received email from Greg Daniels, Intake Coordinator with The Arc of NC's Durham office (again, not to be confused with The Arc of Durham), asking us to email him with a good time to meet for the intake appointment.

At that point, it became apparent that we had dropped the ball, so I sent this: 2005-11-21 Josh email

There was no response, aside from bounces of the two cc:s. We were once again horribly busy for quite some time and didn't get around to doing anything further until June: 2006-06-26 Josh email

Agencies

List of agencies we've dealt with regarding Josh:

• The Arc of Durham
  • Melissa Bent, Respite Care Director
  • Lisa Knelson, Respite Care Coordinator
• The Arc of North Carolina
  • Greg Daniels, Intake Coordinator
  • Kaye Crossland (email bounced 11/21)
• The Durham Center
  • Robin Baker, Director (?)
  • Ellen Holliman, Area Director
  • Flora Druid, Medicaid Caseworker
  • Carla Alston (email bounced 11/21)
  • Alexsandra Manuel, Caseworker (apparently no longer there)