Woozle at 16:10, 29 December 2022

2022-12-29T16:10:04Z

← Older revision		Revision as of 16:10, 29 December 2022
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			{{subpage/date}}
			[[category:Josh]]
			[[category:ASNC]]
			[[category:email]]
	==Introduction==		==Introduction==
	~~[[category:Josh]][[category:dated]][[category:2009-03-19]]~~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:		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:
	<blockquote>		<blockquote>
	We will continue our discussion on issues facing our children in the		We will continue our discussion on issues facing our children in the
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	We sent them the following email (reformatted somewhat for readability).		We sent them the following email (reformatted somewhat for readability).
	==Text==		==Text==
			<blockquote>
	We probably won't be able to come* to this, but we thought we should send in a		We probably won't be able to come* to this, but we thought we should send in a
	few concerns anyway.		few concerns anyway.
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	=== Public School concerns ===		=== Public School concerns ===
	Sandy's profoundly autistic son [[Josh]] is at [[~~htyp:~~Jordan High School\|Jordan]]; he travels there and back		Sandy's profoundly autistic son [[Josh]] is at [[Jordan High School\|Jordan]]; he travels there and back
	on the EC bus. He is technically in 10th grade, but this grade designation is		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,		essentially meaningless due to the very low level of his communication skills,
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	Thank you for listening.		Thank you for listening.
			</blockquote>

Woozle: Woozle moved page 2009-03-19 comments to ASNC to 2009/03/19/comments to ASNC without leaving a redirect: standard format for date-specific titles

2022-12-29T16:06:17Z

Woozle moved page 2009-03-19 comments to ASNC to 2009/03/19/comments to ASNC without leaving a redirect: standard format for date-specific titles

← Older revision		Revision as of 16:06, 29 December 2022
(No difference)

Woozle: updated categories

2009-06-07T13:19:15Z

updated categories

← Older revision		Revision as of 13:19, 7 June 2009
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	==Introduction==		==Introduction==
	[[category:Josh]][[category:dated ~~items~~]][[category:2009-03-19]]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:		[[category:Josh]][[category:dated]][[category:2009-03-19]]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:
	<blockquote>		<blockquote>
	We will continue our discussion on issues facing our children in the		We will continue our discussion on issues facing our children in the

Woozle: Created page with '==Introduction== category:Joshcategory:dated itemscategory:2009-03-19On 2009-03-19, the Autism Society of North Carolina sent out an email to its members about an...'

2009-03-19T18:07:38Z

Created page with '==Introduction== category:Josh category:dated items category:2009-03-19On 2009-03-19, the Autism Society of North Carolina sent out an email to its members about an...'

New page

==Introduction==
[[category:Josh]][[category:dated items]][[category:2009-03-19]]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:
<blockquote>
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.
</blockquote>
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 [[htyp:Jordan High School|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.

2009/03/19/comments to ASNC - Revision history

Woozle at 16:10, 29 December 2022

Woozle: Woozle moved page 2009-03-19 comments to ASNC to 2009/03/19/comments to ASNC without leaving a redirect: standard format for date-specific titles

Woozle: updated categories

Woozle: Created page with '==Introduction== category:Joshcategory:dated itemscategory:2009-03-19On 2009-03-19, the Autism Society of North Carolina sent out an email to its members about an...'