2009/03/19/comments to ASNC

Introduction

On 2009-03-19, the Autism Society of North Carolina sent out an email to its members about an upcoming meeting; the email reads, in part:

We will continue our discussion on issues facing our children in the Exception Children's programs within the Durham Public Schools. In order to maintain as much organization as possible at the meeting and in order to give everyone an opportunity to have a chance to ask questions and have their issues heard and addressed we are asking that you please e-mail or call us in ADVANCE with you question or main concern so we can organize these into groups for discussion.

We sent them the following email (reformatted somewhat for readability).

Text

We probably won't be able to come* to this, but we thought we should send in a few concerns anyway.

(*We've often wanted to go to ASNC meetings, but we generally find ourselves overwhelmed by logistical obstacles. Although you do offer childcare, I'm not sure you're really set up to deal with our adult-sized, nonverbal, and easily- bored Josh... also, getting him safely out of and back into the house can be an ordeal, and we'd have to decide what to do with his two younger brothers, into the bargain.)

Public School concerns

Sandy's profoundly autistic son Josh is at Jordan; he travels there and back on the EC bus. He is technically in 10th grade, but this grade designation is essentially meaningless due to the very low level of his communication skills,

Here are the problems we have run into:

• Schedule changes are sometimes communicated to students but not to parents. This does not work well when the student is completely noncommunicative, and the lack of successful communication poses much more of a problem for autistic students than for regular high-school students.

On at least one occasion this semester, we have found out only by accident that there was a half-day and we needed to be here to meet the bus. If we had not found out, what would the bus driver have done? Even if Josh were able to let himself in the house, he cannot be trusted to do so or even to stay near the house; this is why we have all the outside doors locked when he is home.

• Schedule changes are generally bad for autistic kids; it would be much better if the autistic classrooms ran on a more regular schedule.
• The bulk of the announcements delivered by the school's robocall system have no relevance at all to us as parents of an autistic child, so although we listen to them, if there is an important message, it can get lost in all the other information.
• The robocall system sometimes starts playing its message before our voicemail outgoing message is finished, and part of the school's message gets lost. A recent message lost the date of a snow make-up day as a result, although we were able to find this on the school's web site. What if the message had been so shortened that we had no idea what was missing?
• Why doesn't the school send email to parents who have email accounts, instead of using the phone? This would be more reliable and reduce the cost of maintaining the robocalling system.

In general, though, we realize that the school system isn't properly set up to deal with profoundly autistic kids who really aren't able to benefit from participation in mainstream classes.

In the long term, it would probably be better to have a special school for these kids, which could dispense with the meaningless standard report cards (possibly replacing them with IEP-oriented reports, weekly progress charts, or other more relevant evaluations), could keep a more rigid schedule, and could generally avoid a lot of awkwardness due to the poor fit between profound autism and standard public school structure.

Other, More Major Concerns

Our focus now is on trying to get Josh into a group home. We have been repeatedly frustrated; first we were told he just needed to get Medicaid; he got Medicaid, and then we were told he needed to get CAP, and that he would almost certainly qualify for a slot. Then the CAP funds were frozen. Now we're told that in the absence of CAP, he'll need some other funding source for a group home, and that we should apply for SSI for him. We did this two years ago and were turned down; we have an appointment in mid-April to apply again.

When the SSA interviewer asks about assets, if they specifically mention bonds we'll have to tell them about Sandy's HH bonds, which will disqualify Josh yet again -- and yet we've also been told that we can't simply pay out cash for a group home slot (cashing in the bonds until there are none left, at which point Josh should qualify for SSI) as this would be somehow detrimental to provider-client relations.

So we're stuck in a Catch-22 never-never land, where we neither qualify for government funds to pay for a desperately-needed service nor can use our own funds to pay for it.

In the meantime we have massive spiralling debt (which, unfortunately, does not count against the disqualifying "asset" of the HH bonds) and neither of us can earn a living due to the unpredictable nature of Josh's needs. We are both capable people; the handicap of one person (Josh) is preventing two other people from being productive citizens, and is likely to see all five of us homeless if something doesn't change soon.

We need to know what's happening with the CAP funds, and whether there are any alternatives. Aren't there any private group homes we could place him with temporarily, perhaps? Is there anything we can do? HELP.

Thank you for listening.