Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Monday, December 3, 2012

UN Disabilities Treaty

OK, So while I have DEFINITE political ideas, I shy away from joining the fray of debate because "issues" often lack long-term vision or impact.


While admittedly, I am not anyone's "legal counsel", and I could give up more of my time caring for my children learning more about the UN Disabilities Treaty, I CAN tell you that what I saw of the testimony before congress enrages me.  Mrs. Durbin testified that the IDEA legislation that "enables" our disabled children to get their needs met through public school needs to be extended through out the planet.

Really?  So the IDEA legislation is helping ALL disabled students?  Your statistics of improved school attendance indicates that these students are receiving "improved" care and education?  I CERTAINLY am an expert of what OUR experience has been, and it indicates otherwise...

There is a LARGE movement afoot to require cameras in ALL special education classrooms because the physical and emotional abuse of these students is so prevalent.  I know that pleas for this action come up on my Facebook news feed at least twice a week from the over 20 pages I follow in the Autism community.. and I am WELL AWARE that there are MANY more.  Heartbreaking, gut wrenching stories abound of families who have to become detectives to protect their children from the people who should be caring for them, of families trying to find ways to heal hurts NO child (OR ADULT) should face (physical assault, abandonment, etc.) of families DESPERATE to be partners with the educational system that continues to sideline them and deny services.  There is an entire industry of advocates, authors, support groups, service providers, educational facilities and ALL their educational staff marketed SPECIFICALLY to the beleaguered parents who are told from the day they get the [Autism] diagnosis to "man up", "get their big girl panties on" and become "warrior parents" prepared to "fight the system" tooth and nail, to sacrifice their financial stability because they need to provide therapies & treatments NOT covered by insurance or the educational system while they lose the income of one parent. 

While my experience is with Autism - I know a family with Deafness in which the fight to get appropriate services was years of argument.  The school system finally hired her as a driver to get her child to a school that COULD meet his needs (which of course is several counties away).  She struggles to maintain a job and care for her other children as well.  Where did IDEA "make" the school system meet that child's needs?!  The MOTHER is meeting that child's needs!

While I was active in the Special Education Advisory Committee (SEAC) for my county I met MANY other parents of sped kids.... and EVERY SINGLE ONE OF THEM told me to be prepared to fight, to be prepared to go to the administrators and teachers and hold them to providing the services they had already committed to on paper, the "rights" the IDEA granted their student.  I was warned over and over again that I had to FORCE the school to meet its "legal obligation" to my student.  School administrators talked in one breath about how there were many parents who did not complain about their services, and followed that immediately with complaints of parent non-participation.

To be QUITE frank - KISS MY ASS I.D.E.A. IS HELPING EVERYONE!  It has NOT helped many many people I know - both in my immediate geographic area and through the internet. And it sure as hell does NOT "guarantee" the rights of disabled children to education!

This UN treaty is supposed to hold our system up as an "ideal"!?!  This treaty is supposed to impel other countries to action?  Our "ideal" does not compel our own government to action! How can it compel others?

And it IS a threat to our sovereignty   Ratification of this treaty, they way it is currently written, would create that dreaded legal "precedence" of international law trumping national/ federal law.  The Constitution was not ratified until it specifically delineated what it was NOT allowed to take away from citizens and states - not just what it was allowed to do to everybody.  No UN treaty should take away my right to decide what MY child needs, ESPECIALLY since he is "special needs"!  

You wanna hear our story? Check out JT's Journey on Facebook - read the notes. I have NOTHING to hide.  We were done WRONG, but NOT illegal... we checked.  It is IMPERATIVE that I be respected as the "expert" on my child, as the "authority" on his needs.  I DID try it society's way - I gave my child to the school system, we went to lots of doctors, and I played just as I was supposed to - I went to the IEP meetings, I researched my options, I compromised on what the school would provide, I was an active parent, seeking to follow up at home with what they did at school, to be sure that I advocated and participated in as many fronts as I was legally allowed, and STILL we were violated, STILL we were victims of other people's bad personal politics, STILL we had a 5 year old who's body was killing itself with stress, in a VERY literal sense.  


And a funny thing about our choice to "opt out" of help from the schools.  Those people who are the home school legal experts, outright said to refuse all services from the public system if possible, because LEGALLY, if you receive any services, they cannot defend you.  Did you read all that stuff they sent home about your special education eligibility?  It says that if you agree to have your child found eligible, you MUST now abide by the decisions of the IEP team - period.  If the "IEP team" decides that you, the parents, are retarding your child's progress, or that you are inappropriately supporting your child's disability - they have the legal responsibility to override your participation on the IEP team and make decisions anyway....  I don;t know about everyone's situtaion, but we ALWAYS had more school employees at any IEP meeting than parents.  Yes, If I refuse to sign it, they can't "implement" their plan...

What? You don't think that the school can get social services involved and have your child taken?  That is EXACTLY what happened to my neighbor.  It only takes one accusation (grounded or not) of neglect (like your kid doesn't get enough baths) before social services is REQUIRED to investigate - because that is what we have set the school systems and teachers up to do (see my previous post about teachers).

Maybe you get help through the "waiver" that gets medicare to pay for services in home?  It is a waiver BECAUSE you are waiving your "right" to have your child institutionalized.  All but 3 families I have ever spoken with who get/ use the waiver have told me that had to tell social workers that, yes, their child requires institutionalization (even though advocates swore that was illegal).

LAWS do NOT protect people, PEOPLE making morally correct decisions protect people.  At this point, my family has withdrawn from the games, we refuse to allow ourselves to be victims of other people's personal politics and job ploys.  We have holed-up, and shut-up and tried to find our OWN healing... And THAT right is the one that needs to be protected.

Look, I want people with disabilities to be protected all over the world.  I do not want ANYONE EVER ANYWHERE to be persecuted or abused or neglected because God made their bodies or brains different from the "norm"... I fervently believe that God made every person different for a reason, and they have a divinely commissioned task - that's why they are here - and I want EVERY person to be enabled to complete that task, to grow and share the BEST of themselves...

But, all politics is LOCAL.
It never seems to matter - until it happens to YOU. And it happened to me, so I want to keep MY CHILD SAFE.

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