This is the little history of our attempts to obtain proper care for Sandy's severely 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 (3) we were overwhelmed with lots of little but vitally important things to keep track of, including an ever-worsening debt situation.
As long as Josh was fairly easy to manage (which was the case until mid-2007 or so), his needs were just one of many priorities (including the needs of the younger kids), so progress tended to happen in short spurts between other things and gasping for air.
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
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.
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
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.)
In mid-2007, Josh started hitting puberty. The first hint of trouble came when he walked away from his caregivers at Githens (Middle School), which had never happened before; Josh had always been the dependable one. Over the summer, he twice attempted to escape from summer camp. These were mild incidents, however, and we didn't consider them cause for alarm.
His first year at Jordan High, however, they somehow misplaced his folder (it didn't show up until many months later) and consequently did not continue with any of the routines he had had in place at Githens. Over the course of the year he escaped from Jordan at least two or three times and had to be chased down by the police; 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.
(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. We also applied for Medicaid for Josh and requested that he be put on the CAP waiting list (which requires Medicaid).
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.
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 "developmental 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, 4 or 5 days a week, 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 to the point where we could really only get 3 afternoons of outings for Josh. 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 were 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 -- leaving us with only one or two afternoons of therapy and respite per week -- while we dealt with the fact that some workers were less reliable than others (we often wasted 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 was basically no help at all, but was also too nice to just send away; we kept hoping Josh would get used to her and they would have some successful interactions, but it never happened.
We did finally (2008-08-30) manage to get Josh on Medicaid, which we had been told was one of the main obstacles to getting residential and respite care.
Over the course of 2009, while we searched for residential services, the therapy 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, so we stepped up our efforts to find longer-term residential solutions.
Therapeutic Foster Care
We identified a family in Raleigh -- a woman with two older boys -- who seemed capable of handling Josh better than we could, although for some reason there was no way to do a trial stay. Unfortunately, in between the application and the approval, Josh's Medicaid came up for renewal (June 2009) -- and was switched to NC Health Choice, which does not cover residential services.
It came up in a personal visit to the DHHS (which approves Medicaid and Health Choice) in late July that Josh could still qualify for Medicaid if we could get two doctors to sign a certain form -- so we arranged the necessary evaluations, resubmitted the paperwork, and after only three emails, at least one or two phone calls, and then a further week or two of waiting, Josh had Medicaid again (mid-September).
In late November of 2009 a "Therapeutic Foster Home" situation became available at A New Way Home (NWH), 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, which he did.
(At some point during this process, we had to get an approval from ValueOptions. This was a harrowing trial just by itself, as they are an extremely opaque organization from the "customer"'s point of view.)
The overnights apparently went well, but then we seemed to be having a communication block with NWH as far as scheduling Josh's move to live over there. After repeated inquiries, we heard from the service agency that NWH had changed their minds and decided to go into a different line of business.
We started looking around again, and lined up a trial afternoon at another TFH, but after the follow-up trial overnight the lady running it said (very sensibly) that she didn't think she could handle him.
A couple of months later, NWH resurfaced suddenly and were ready again to host Josh. The provider now informed us that NWH had earlier decided to accept an "emergency" case which was more urgent than Josh's situation, but that this had not worked out well, so now they were available again.
I will have to find my notes to get the details, but basically:
NWH went well at first, though there were warning signs. I had to come over repeatedly in the mornings to either help get Josh dressed in time for the bus or take him to school myself. I had to wake up extra early in the morning (at something like 5:00am) just in case, so I could be over there in time if they did need help.
After a week or two, they decided they could not handle Josh on weekends (he had damaged the burglar alarm and punched a hole in the wall when he got bored), so we had to pick him up from school on Friday afternoons and deliver him back to school on Monday mornings. The daughter made it clear that she sometimes had an infant over at the house when Josh was there, even though we had warned her about Josh's tendency to seek out the smallest and weakest person in the room and hit them.
Then came several incidents where we had to just come get him, accompanied by vague warnings that they weren't able to cope with him and that this was somehow our fault. At least once or twice we decided just to keep him and let NWH go, but then they would seemingly change their minds and be eager to give him another try. On one occasion they even promised (after some pressure from elsewhere, which is another story) to resume keeping him on the weekends, an offer we could hardly resist.
It did not work out, though it took several months for the whole thing to play out.
NWH kept complaining about Josh's behavior -- the fact that he was often awake at night, that he "has no interests" and "all he does is walk" -- and pushing us to take actions which they thought might solve these "problems". They were sure that his acne was bothering him, they were sure his teeth were the cause of his screaming tantrums, and they kept pushing for medication to help him sleep at night.
We got him an appointment with the dermatology clinic at Duke, and conveyed him there ourselves. We had to do a lot of research to find where to take him for a dentist's appointment, as very few practitioners are willing to deal with a noncommunicative patient, and even fewer of those take Medicaid. We did finally connect with the UNC School of Dentistry and took him there for a preliminary exam to see if he would be cooperative with people looking into his mouth, which of course he was not. We made an appointment for him to be put under full anesthetic and have any necessary surgery done the same day.
As for the medication: we got them Benadryl and we got them melatonin, both over-the-counter medications known to help with sleep. They made it clear that they wanted something stronger. We said that we were extremely reluctant to use any drugs whose sole intent was to control Josh, and that if we were to consider using any drug it would have to be something where there was some reason to think it might help Josh to function better rather than to slow him down. They appeared to drop the matter at this point.
Finally, there was the one very weird morning where I had driven over to NWH to get Josh dressed (while the daughter's two young kids watched TV) and was about to take Josh off to school when (I think) the boy, the older kid, asked me to wait, because his grandmother (i.e. the mother of the mother-daughter team, the owner of NWH) wanted to speak with me.
As I may have mentioned, waiting around with Josh before going anywhere is a bad idea. He had been cooperative so far, but that could change at any moment. She kept me waiting for at least 5 or 10 minutes; after a couple of inquiries relayed via the kid, she finally came out of the bedroom, in her bathrobe, and started yelling at me -- "You can't control him! He needs drugs!"
Yelling around Josh is also a bad idea. He generally does not react well to loud displays of emotion, even when they are happy. She could hardly have done more to set off a negative reaction from him if she had tried.
Fortunately, neither Josh nor I lost it at that point. Tightly clamping a lid on my temper, I calmly told her that this was not an appropriate time to have that discussion, and that I was taking Josh to school now. Amazingly (or perhaps not so amazingly -- I'm sure Josh didn't want to be there any more than I did), Josh remained cooperative and I took him to school.
But we decided he was not going back, no matter what they promised. (I had decided it that morning, when I was being yelled at; Sandy concurred.)
Phase V: real solutions, finally
Unfortunately, Josh was so afraid (we think) of going back to NWH that he would refuse to get dressed to go anywhere. We couldn't even take him to school, a place he normally enjoyed being.
I'm guessing it was a few weeks later that Terry Ames first mentioned the Hughes Center to us, and that they had an opening since they had just begun accepting patients from North Carolina. This would only be a temporary situation -- average length of stay at Hughes is 9-12 months, but they would train Josh and get him back into a routine where he could be managed at a lower level of care such as a group home.
We immediately drove up to visit the place (for the life of me, I can't remember what we did with Josh that day -- maybe his grandmother took him; he was still willing to do things for her), got a very positive impression, and put in an application. The application was accepted, so then it was time to repeat the process with ValueOptions... which also accepted.
(Josh's dental appointment came around at this point, maybe two days before Josh's move up to Hughes. A great deal of physical struggle was involved in getting him into the car, then getting him out of the car, then keeping him calm while we waited over half an hour for intake, then another hour or more for the surgical team to be ready. This further eroded his trust, which made getting him into the car to go to Hughes -- and the whole ride up there -- even more harrowing.)
Josh's stay at Hughes (which began at the end of April, 2010) went very well (finally!), but after only six months ValueOptions decided Josh needed to be moved back to an ICF/MR facility in North Carolina -- not that there were any openings (he had been on a waiting list for one group home since 2006) or even a formal list of places we should apply to (these things are apparently kept secret on a "need to know" basis), much less that they had identified a place they wanted him to go to, and even though Hughes was in fact an ICF/MR.
We appealed the decision, which is another long story, but managed to get Josh's stay extended for several more months -- though not all at once; I think there was a series three or four months when we were under threat of Josh's funding running out at the end of each one, so we were constantly in a state of panic about finding a residential placement right now...
Through the lawyer we hired to help us with that appeal, we heard of another place, RHA Howell, which didn't have an opening right then but they were very large and had openings several times a year. We put in an application, and continued trying to organize a search for a placement...
...when suddenly, in January or early February, there was an opening at one of RHA's smaller facilities less than an hour from Durham.
Long story short: Josh moved there at the end of Feburary 2011. So far (June 2011) it is going well -- not entirely without incident, but they have successfully handled everything that has come up, and there is every indication that they have the skills, resources, and understanding to deal with anything Josh might do.
List of agencies we've dealt with regarding Josh:
- The Arc of Durham
- 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: