One of my readers e-mailed to say that she started to comment on my second post on "Racial Disparities in Autism Services." Her comment was in fact an full-blown essay (and too long for the comments), and I'm posting it here for the wrap-up, "Your blog post re ASD and more money agenda":
False [about the racial disparities]. There is no difference between socioeconomic status or race and support. The only difference between parents is gumption. Are you willing to have a "teacher" look you in the eye and tell you they are the "expert" when you as the parent spend more time with your child on a daily basis? All the material for a sped [special ed.] parent to be "fully informed" is free, they may represent themselves in court for free, and every state has a parent center just to help due to IDEA [Individuals with Disabilities Education Act]. While it has always been the squeaky wheel that gets the oil in local education agency (LEA) terms from PTA to sped, the one factor that explains this disparity is parent literacy. Think about it. A layman (or translator) can do it but it takes concerted effort.
More importantly, however, is not what the (greedy) parents negotiate for but what works best. The aides, o/t, speech, etc. are all irrelevant if the parent is not focused on the student always having access to regular education material, and finding the proper reading methodology at an early age to become proficient by 3rd grade. Otherwise, it is all an academic catch-up game fighting the entrenched school system path of sped student tracking for behaviour modification warehousing to age out of the system.
Also, this is not a matter of more funding. Sure, the teachers union is pleased to build the agenda for more money and staff, and there are, sorry to say, numerous parents happy to delegate their parental rights to self professed "experts" but it is the exact opposite of what any sped student needs to make their time matter just as a typical student's education block time would and graduate, irregardless of diploma or certificate of completion, to independent living. Lofty goal you might say but if that is not the desired path for every typical AND sped student, then someone, at some point in that student's academic career, denied them of the opportunity to further try and achieve learning milestones. (Granted, some students with mental impairment will plateau, but as a parent, don't you want to be in on that decision?) You must ask yourself, is this task a functional life skill? Reading, writing, basic math, following directions, etc. all apply within a curriculum discipline. (Tragically, many a parent and student find this out too late, hence the academic catch-up game, tracking, and excessive dropout rates.)
The one thing that could make all the difference right this moment: parental rights. We all know they don't end at the schoolhouse gate but if schools opened up and allowed parents to be their child's aide it would diminish school retaliation and an informed decision can be met for the academic/behavioural path choice that will have to be faced (with no regrets) for every student. Sadly, teachers are loath to agree to have someone around their classroom who will hold them accountable. After all, the expensive seminars and training the teachers get that the school districts pay for to accommodate sped students can then be their calling card to extra cash on the side for their home based sped "expert" business during the summer months and holiday closures. No double dipping money to be made off parent experts.
Bottom line, if you have an ASD child, homeschool. Focus on proficient reading and giving them the background knowledge to jump into the system in 6th or 7th grade, or even 4th if they are reading proficient by 3rd grade. Homeschooling will eliminate the distraction that socializing brings until they mature. Homeschooling is easy, inexpensive, and fun. I promise. However, if you can not, then I can not stress this enough: You simply MUST shadow your child for the day. You should be able to show up and do it but if the school insists on your making an appointment to do so, then by all means accommodate them, we don't want to start off antagonizing too much above and beyond the initial request, but do insist it be within three days or so. One day the MOTHER, and a separate day the FATHER, must shadow the student for the entire school day. Speak not and take notes. Volunteer to be an aide. Enter the rabbit hole then visit WrightsLaw.com
P.S. Once you have your PhD in IEPs, and you'll know, then volunteer to become an IEP advocate for foster kids. It is not very time consuming, and can make all the difference in smoothing a kids home groove if any problems or concerns with school/sped are able to be delegated with continuity until everyone is up to speed.
P.P.S. Regarding the article, what is to be learned specifically is that the tragedies are of the parents own making. Gissell's parents speak no English but expect their autistic daughter to after being placed in a special education classroom, tracked for behaviour modification with no access to regular education material for 8 years? Her mom doesn't work but never incorporated supplemental homework let alone homeschooled. (If the school is teaching her only Spanish, I would consider it abuse to raise a disabled child in America who speaks no English.)
Jese's mother was content to have him suffer in silence for six years before an ambulance chaser found her through a group of non-English speaking parents with ASD children. (Six years in LA and his mom can't speak English?) Must the school district and PTA do everything in duplicate or triplicate or more to accommodate other languages other than the one in which they do business, English?
I bet the oft noted 30 minutes a week during school of speech therapy for each student are two 15 minute group sessions a week. Useless. This is the IEP standard operating procedure across the nation for sped. Period. Furthermore, there have been studies showing institutionalized behaviour is learned, and some of the remediated students can make considerable progress. We haven't even touched on restraints. That we allow civil servants this power is shameful.
However, I think you missed the real reason this gem of "racial inequality" was brought forth, Mr. Douglas. The "wealthier parents" are the evil 1%. So much of this article's emphasis is on the fact the white parents are using, and paying for, lawyers to secure services despite the fact (and never mentioned) the IDEA law allows parents to represent themselves at all levels; IEP, hearing officer, mediation, administrative law judge, appeal, etc. For parents, there are no special legal points or advantage in procedure or law background to having a costly education attorney as legal representation. So why do they do it?
Parents rarely win vs. school administration. Look at the DOE stats across the nation and it is systemic bias. In some districts parents never win. Go to the mattresses. Parents have had to bring in the law community heavy hitters to give any grievance oxygen, and then network to force procedural change on civil servants to bring them into compliance with federal law. These white parents are paving the way and literally paying extra for it too boot. The Latinos, blacks, and illegal aliens will now have easier access to sped services upfront, but would it kill anyone to appreciate the financial drain and time sacrificed by the evil wealthier white, English speaking parents?
As a nation, we our $15 trillion in debt. It's not personal. It's business. Let's have the conversation regarding personal responsibility, parental rights, and lack of minority intellectual curiosity.
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