Josh/getting services

Overview

This is a little history about our attempts to get various social services lined up for Sandy's autistic son Josh. Long gaps between the various contact attempts are generally caused by two things: (1) we are both phone-phobic, and (2) we are both bad at keeping track of lots of little things and overwhelmed with lots of little but vitally important things to keep track of. Trying to get services for Josh, then, goes into a long, randomly-rotating list of things which we try to do in between gasps for air.

2008-03-03 Update: We finally succeeded in getting him back in (as of mid-February)! Someone at Community Partnerships suggested that we could use Josh's latest IEP as an evaluation, making it possible to skip the intake evaluation (which had been the most recent stumbling block) and go straight to filling out the "person-centered plan". We've also applied for Medicaid and requested to get on the CAP waiting list (which requires Medicare). However, Josh's situation has escalated yet again, and it's unclear what they can do about it. Stay tuned...

Prelude: Respite Care

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 continued to ask about her occasionally for several years) and who would confirm availability via email. Unfortunately, she went off to go to law school and became unavailable.

*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.

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*.

Main Drama: The Durham Center

Phase I

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 hair-tearing situation, and we didn't make any significant progress for about a year.

Phase II

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 2609 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 Alston (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

Phase III

Josh had a week off between the end of summer camp and the beginning of school, so (hoping to make good use of the time when he would be stuck at home anyway) we called The Durham Center on 2006-08-21. The procedure has apparently changed since it was last explained to us; the intake assessments are now done by a private company, Matchbox Health Services; Sara(h?) at The Durham Center said we had been set up for an appointment the very next day (8/22).

When we arrived (about 10 minutes early) at Matchbox, however, we were told that they knew nothing about our appointment and that the person who would be assigned to do the assessment was "on her way" and could do the assessment as soon as she arrived. We decided to wait; fortunately Josh was in a good mood, and did not fuss much at being made to sit around in a mostly-empty room with nothing to do, and the person arrived after about 45 minutes (we probably would have left a few minutes later if she had not arrived).

Unfortunately, it turned out that since she had not been warned about the appointment, she was unprepared to do the intake (apparently she needed time to get paperwork together); she was able, however, to spend about 2 hours with us taking down information and having Sandy sign and initial various forms. After this, we were told we would be called to set up the real intake appointment, and that hopefully it would be that same week (we explained about Josh having a week off).

They never called.

(Why didn't we call them? Phone phobia, combined with having way too much to do and general problems with being organized -- problems which have plagued us both since grade school. If we weren't focused on getting help for Josh, we would probably be spending more time working on our own mental issues... except that we wouldn't need to as much, because it's only extremely stressful/overstimulating situations like this which cause problems, for the most part.)

Phase IV

In mid-2007, Josh hit puberty and began walking away from his caregivers at Githens (Middle School) and escaping from summer camp. This was immediately followed by his first year at Jordan High, where they somehow misplaced his folder (it didn't show up until many months later) and consequently discontinued all the routines he had had in place at Githens. He was suspended from Jordan on his birthday for hitting -- even though he was in a self-contained classroom -- and Durham Parks & Recreation called on the same day to say they couldn't handle Josh in after-school care anymore either. Josh's behavior continued to deteriorate.

(As a result of Josh escaping from their care, DPR also fired many of the workers we liked best, essentially scapegoating them for an incident for which we were not holding them responsible and which could not easily have been prevented. This was extremely unfair.)

Consequently, we stepped up our efforts to get Josh back into The Durham Center. In early 2008, we were able to make contact with Terry Ames, the new director at The Durham Center. He explained the intake process as it currently stands, and with some very focused effort we were finally able to complete a new intake by using Josh's IEP as a substitute for him appearing personally for an intake interview, which had been the main obstacle.

Josh was assigned a caseworker on February 7, 2008. Josh continued to attempt to leave the house at night, cry at night for hours, hit the walls, and successfully leave the house at night while we tried to get therapeutic services and find any kind of respite care.

Services

After one false start and one horrible failure, we were able to line up a couple of workers to start taking Josh out after school (since DPR would not longer take him) for a couple of hours each weekday, officially under the banner of "personal care" and "physical therapy". Although neither of those terms really describe what Josh needed, they were the best approximation for which funding was available. (I'm not sure exactly when this finally got going; the first definite indication in my notes is from December.)

These outings helped immediately, as Josh became more tractable when he was at home, and we were given an extra hour or two in the afternoons when we didn't have to constantly monitor him. He still became irritable and prone to behavior problems on the weekends and holidays, however, so we began a search for workers who were available on those days.

Unfortunately, before we were able to find someone, the service hours were cut back. We appealed this cutback, traveling to Raleigh for the hearing, but it was upheld. During that hearing, "informal" though it was, our abilities and judgment as parents was repeatedly questioned; it was not a pleasant experience. We were explicitly told not to record the meeting, as it was held in confidence (presumably for our protection, or Josh's) -- this soon became a common occurrence, unwanted confidentiality being imposed for our protection -- but I think I recorded it anyway.

The service hours were cut at least two more times while we dealt with the fact that some workers were less reliable than others -- we wasted many hours trying to find out if a worker was coming or not. Getting Josh ready to go too far in advance of actually going somewhere has always been a bad idea, as he is prone to getting upset and may even decide to take all his clothes off and refuse to go anywhere if satisfaction is delayed too long. We also ended up with one worker who basically were no help at all, but were too nice to just send home; we kept hoping Josh would get used to her and they would have some successful interactions, but it never happened.

Over the course of 2009, the hours were ultimately cut back so much that it hardly seemed worth the trouble of finding a replacement worker. We began to realize that this wasn't just a case of us feeling overwhelmed by Josh (raising children generally is pretty overwhelming) but a case of truly legitimately not having the skills or resources to give him the level of care he needs. We began looking in earnest for longer-term residential solutions.

Therapeutic Foster Care

Seemingly out of nowhere, in late November of 2009 a "Therapeutic Foster Home" situation became available at A New Way Home, a mother-daughter operation in a small residence in east Durham. Although the daughter had children, she said they would be living elsewhere and Josh would be the only child on location (this later turned out to be untrue).

We took Josh over to check things out; he seemed to be comfortable with the layout, since there was a room with two exits to the main hallway, allowing him to "orbit" -- one of his favorite activities. The mother and daughter seemed pleasant and caring. It was decided that Josh would do two trial overnights in December.

This page is a draft; editing is still in progress. Information may not be accurate or current.

Phase V: real solutions, finally

The Hughes Center, then RHA Howell...

Agencies

List of agencies we've dealt with regarding Josh:

• The Arc of Durham
  • Melissa Bent, Respite Care Director: now working with Childcare Services Association in Durham County
  • Lisa Knelson, Respite Care Coordinator: killed by hit-and-run driver 2006-10-05 [1] [2][3]
• The Arc of North Carolina
  • Debbie Goda
  • Greg Daniels, Intake Coordinator (moved to Lumberton office)
  • Kaye Crossland (email bounced 11/21) (no longer with Arc of NC)
• The Durham Center
  • Robin Baker, Director (?)
  • Ellen Holliman, Area Director
  • Flora Druid, Medicaid Caseworker
  • Carla Alston (email bounced 11/21)
  • Alexsandra Manuel, Caseworker (now working at the Murdoch Center in Butner, according to one source on 2007-05-08)

Providers of Developmental Therapy we might consider, when/if we get to the point where that might be useful:

• Alpha Management Community Services
• Touchstone Residential Services
• Annas Resources: not actually listed by Yolonda as an option, but they say they cover Durham County and are endorsed by The Durham Center, and I think someone at Arc of Orange County recommended them but I need to check my notes.