Sunday, September 21, 2014

The Situation is a Microcosm of the Ills in Our Society

“When a school district fails a child of color with a disability, it is double jeopardy.  It’s a microcosm of everything wrong in our society.”   ~ B Giordano

Back in November 2010, I wrote a post about recruiting the help of an advocate to assist us in getting appropriate accommodations for my son.  I trusted this person to be an advocate for my child.  The district was discounting the NYU Child Study evaluation.  The advocate convinced me and my husband, our concerns were well founded and backed up by leaders in the field of Autism Spectrum Disorders.  Unfortunately, the school district had an agenda.  The agenda was to provide as little as possible for my child although severe deficits were revealed in the very lengthy report complete with graphs and data analysis.  No matter.  The district succeeded in fulfilling their unsavory agenda with a dog and pony show for the advocate convincing her, my son was well placed in the current program.    The end result, my son was denied extended school year due to the special education teacher refusing to advocate for it.  In our view, it was retaliation for expressing the concern the teacher's judgement was clouded by racism.

Our suspicions were not far off the mark.  As it turns out, a classmate of my son who didn't have an official diagnosis (shared by the classmate's parents) only suspicions of ADHD was not only provided with extended school year but a referral to BOCES.  When I asked the parent how difficult it was to gain that accommodation for her son, her response was and I paraphrase, "no issue at all".  In fact, the special education teacher advocated for it!  As it turns out, the student was white.

It didn't matter that back in 2010, school psychologist noted on the IEP, issues about my son's working memory challenges.  In fact, in her words on the IEP, she deemed my son to be borderline "mentally retarded".  If the special education teacher considered my son to have learning challenges, why would she advocate against an extended school year?  "Due to his distractibility, visual prompts or cuing are helpful as they help to gain his attention and engage him in his learning. Processing difficulties, poor attending and high distractibility can impact Aren's overall performance and new learning. These should be taken into consideration when assessing Aren to be sure an accurate reflection of his knowledge is being gained." ~ T. Nethercott, Special Education Teacher

A child with impaired intellect needs all the support he/she can receive.  It was downright retaliation for calling her out on racism.  Truth hurts so bad that it makes people want to get even, even if it means, negatively impacting a child!

Further, this special education teacher is now a CSE Chair in the district.  Back in 2010 at a CSE meeting, this 2014 newly appointed chair verbally expressed that she "is not concerned about state tests. This person is now in the decision making position regarding very important outcomes about special education student accommodations.  It is apparent, emotions could cloud her views and decision making.

It's a concern because what assurances will parents have that this person will not "cherry pick" which student gets appropriate services, supports and which will be left to flounder as my child was made to do.  There is a preponderance this educator/administrator gave preferential treatment to a white student without an official diagnosis over my brown skinned child with documents fully identfying his disability and needs as it relates to his education.  It is a microcosm of what is wrong in our society and feeds right into the statistics of the disparity of how children of color are treated differently.  White privilege prevails, alive and well even among educators!

"Young Black men — across the board — score below their counterparts in other racial and ethnic groups when it comes to graduation rates, literacy rates and college preparedness. And many African American men, in turn, are virtually locked out of employment and are filling up the nation’s prisons in disproportionate numbers."  Fact Sheet:  Outcomes for Young, Black Men ~ T. Thompson

Is this the fate for my child?  Will my child end up yet another statistic?  What does it say about this school district that deliberately withholds the educational tools my son needs as of yesterday and 6 years ago!  Here we are, white parents advocating for our African American child so that he doesn't end up on the wrong side of the tracks and every obstacle has been thrown in our path!  We have situations in this country like Travon Martin and Ferguson in part, because as much as many want to believe, children of color are just not given the same opportunites and access compared to white children.   Statistically, this is accurate still in 2014 and it's alarming.

As parents, we are working to create an appropriate path for our son so that he can hopefully, live a full, meaningful life, making contributions in our society.  The school district instead, focuses on how to minimize much needed accommodations!  If he ends up a statistic and falls into harms way, white society will point a finger of blame at him!  Society will not acknowledge it is the fault of the system.  And, who is the system?  The system is US - you, me, everyone.  It takes people to make a system.


Racist tendencies apparently is an issue in this district.  Back in February 2012, it came to my attention that there was no display in the school library on Black History Month.  I wrote to the elementary school principal/CSE Chair about the apparent lack of education and available reading material for students on Black History Month.  This is the appalling response I received:  "At the primary level we incorporate stories and activities within the classroom. In project Adventure this month they learned about "Bojangles"  and how to tap dance.  We also do a great deal around MLK and Abraham Lincoln."  ~ K. McEnroe

Apparently, she was not well versed that African Americans do not take extra pride in "tap dancing".  What happened to teaching young, white minds about people such as Rosa Parks and Fredrick Douglas?  I live in a very homogenous community.  It's important to teach children about the positive contributions African Americans have made in our country to help broaden an otherwise narrow point of view.  I viewed it as a direct "dig" to me because this principal/CSE Chair was not an ally for my son either!

Only recently, the district cut the hours of the only African American educator we have in the district.  An educator that teaches music/voice lessons to students and has helped them earned coveted awards.  An eduator who has been instrumental in bringing diversity and culture through song and music into this homogenous community; had his hours cut!  The last thing we need in this community is not less awareness to different cultures; we need more.  It's a microcosm of what's wrong.

Earlier this year, the district ordered a triennial psychoeducational evaluation on my son.  I was notified by the CSE Chair the district will pay for it but provided me with only one professional to choose from.  We were not comfortable with a single choice.  In fact, the district should have provided us with a list of professionals to select from.  Given that the district has created this atmosphere of distrust, I pushed back.  I sought an equally qualified professional who has worked with other districts in the Hudson Valley area.  We had not met previously.  She didn't know my son so it was reasonable to expect an unbiased, objective evaluation with a focus on the student.  The CSE Chair bristled when we advocated for them to hire her.  At first, the district flatly refused.  I pushed back telling them they need to explain in writing why they refuse to hire her when she possessed all of the required credentials to perform the evaluation.  Eventually, after much push/pull, the district agreed.  Dr. Rivera of Learning Insights, performed a very extensive evaluation on my son.  It took several days to complete and another trip down to The Bronx to The Albert Einstein College of Medicine, Cognitive Neurophysiology Laboratory.

Fast forward, the psychoeducational evaluation was completed this past April.  The annual review was held and when it came time to discuss the evaluation the district paid for, the CSE Chair pushed it off!  And, by the way, we now have 3 people designated to chair the CSE.  One of the Chairs, is the school psychologist.  The same school psychologist with only an M.A. degree who considered my son to be "mentally retarded" without testing him first!

Last week, after I took the initiative to call a meeting with the CSE/IEP team to discuss the recommendations in the evaluation.  The new CSE Chair delayed on the recommendations.  Instead, she requested the school where my son attends, to do assessments regarding his level of functioning!  What was the psychoeducational evaluation for if not to determine his current level of functioning?  Once again, the district has created another block and pushed off further discussion of the evaluation's recommendations for 5 weeks!  It seems the district is working overtime to figure out again how to short change my son because apparently they don't like the facts and supporting data.  It seems they keep working toward an answer they want instead of embracing the facts from experts in the field of Autism research.

Listen as the team gets a big chuckle from the list of recommendations needed for my son.  In fact, the CSE Chair agrees wholeheartedly it's too much to expect a nine point list of accommodations for the student stakeholder that is only 4 grade levels behind on reading, writing and math!  My husband and I failed to see the humor.

The agenda is to give as few accommodations as they can get away with.  By many accounts from other parents I speak with, it's a disgusting, prevailing thread of districts working to give as little as possible to our kids in need.  Further, it's disturbing that race is factored in regarding students that receive versus those that don't.  Yes, I'm making a case for it.  Yes, I have many, many documents to back up everything I state on this blog.

If my son doesn't get what he needs immediately in the way of tools to help with his working memory deficits, research-based reading, writing and math programs, he is, in fact, at high risk of failing!

 “Our deepest concern shouldn't be just the kids who can't go to school, but those who are going and not getting proper education”  ~ Samer Chidiac

Thursday, September 18, 2014

When The Proof In The Pudding Still Isn't Enough

"It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents, and worst of all you know that you are not just stupid."  ~ Susan Hampshire
It has been 6 years in my current school district since I began to advocate for my son's educational needs.  In all these years, I've come up against a great deal of denial, discounting of parental concerns and outright withholding of appropriate educational tools to help meet my son's very particular and specific educational needs.  The biggest challenge my son has is with Executive Functioning.  You might ask:  what is Executive Functioning?  It's a fair and reasonable question.  Most parents don't think in terms of how well or not their child's executive functioning until it's brought to their attention by either doctors and/or educators.  Prior to extensive testing performed on my son, I knew nothing about it.
According to the National Center of Learning Disabilities, executive functioning is defined as: 
a set of mental processes that helps connect past experience with present action. People use it to perform activities such as planning, organizing, strategizing, paying attention to and remembering details, and managing time and space.

Unfortunately, weakness in the area of Executive Functioning impacts all levels of learning and most importantly, the ability to retain newly learned material.  It is extremely difficult for a child with Executive Functioning challenges as it relates to working memory, to make gains in the learning environment.  It is also extremely frustrating for the child as they realize, they are not making strides when compared to neuro-typical children of the same age.  It impacts their self esteem and can lead to a host of behavior problems and rightly so - they don't understand fully why they are unable to recall the lesson that was just taught 2 minutes ago.  What they do know is embarrassment and not feeling very good about themselves.
I am not a PhD or M.D. but I am a very concerned parent.  I have been raising the warning flag with my district for 6 long years.  I've come up against every obstacle, excuse, delay tactics from my school district trying to get research-based tools and an appropriate education environment for my child. In fact, I have 2 file drawers filled with documentation demonstrating that I've tried in earnest to have my son's educational needs met in school.  What is currently in place, is not working, appropriate and less than adequate.  And, it's not that the school placement is bad per se, my son loves all the animals.  However, he needs appropriate academics in place to help him learn.  If he was in a classroom of his peers that doesn't include children with emotional disturbance that would be more appropriate for him.  If the distirct and school was willing to put research-based tools in place to help with the Executive Functioning issues, it would be a better fit.  However, at present, it is not the case.
My son is in a school with children that have emotional disturbance.  Technically he should be in a class environment with children similar to himself.  My child should be in a class with children who have similar academic, emotional, and physical needs (this is called “functionally grouped).  Since my son does not have emotional disturbance, the behaviors from the children that have E.D., can negatively impact my son and distract him in the classroom environment.  As it turns out, since my son began in September, he has been demonstrating more aggressive and defiant behavior at home.  It is very troubling and causing a tremendous amount of stress in my home.
The issue of the Executive Functioning challenge has been brought to the attention of the school district many times with either data from tests and/or by educators.  Although, the school district has been made aware and is now seeing through valid tests that not only has the deficit in Executive Functioning impacted his learning and retaining new information, the most recent evaluation that was ordered by the district is showing a rapid decline since 2008.  This is alarming for me as parent.  Further, what does this mean for my son?  It means, he'll not be making much progress without an appropriate environment that not only understands the impact of a weak working memory but has the tools to support and help strengthen this very impaired area.  Basically, it is huge because it means the difference of whether my son will succeed or become another statistic pushed out the door at the end of his grade school education.  It also means failing my son although every step has been taken to the point of exhaustion to get the district to provide what is necessary according to the law under IDEA.
IDEA:  The Individuals with Disabilities Education Act (IDEA) is the nation’s federal special education law that ensures public schools serve the educational needs of students with disabilities. IDEA requires that schools provide special education services to eligible students as outlined in a student’s Individualized Education Program (IEP). IDEA also provides very specific requirements to guarantee a Free Appropriate Public Education (FAPE) for students with disabilities in the least restrictive environment (LRE). FAPE and LRE are the protected rights of every eligible child, in all fifty states and U.S. Territories. 

There is an awareness that is being blatantly and deliberately ignored by the school district and all those professionals in charge of providing my son with an appropriate education.

Following are snippets taken from evaluation reports regarding my son's Executive Functioning issues:
April 2014 - According to Lenore Rivera, Ph.D who was hired by the district to conduct an intensive psychoeducational evaluation.  The evaluation was to determine appropriate services based upon need:  Aren's executive function deficits as it relates to working memory have gone down significantly since 2008.
*April 2011 - Psychoeducational Evaluation performed by in district school psychologist:  Continued weakness in organizing language, inability to recall and follow multi-step direction of increased length and complexity.
April 2011 - According to The Albert Einstein College of Medicine, Julianna Bates, MD:  Aren should receive a full neuropsychological or psycho educational evaluation in order
to assess his current level of cognitive functioning, and to document his profile of
strengths and weaknesses so that more effective intervention services can be
implemented. Particular areas of concern for further evaluation include receptive and
expressive language, working memory, and attention.

August 2010 - According to Melissa Nishawala, MD, NYU Child Study Center, NYC:  "Aren has many of the motor difficulties and the executive function difficulties, which are common with Autistic Disorder. He has significant difficulties with distractibility, organization, sequencing, and following through."
August 2010 - According to Elizabeth Roberts, PsyD, NYU Child Study Center, NYU:  Executive Function - working memory extremely limited, deemed impaired. 

Although my son had an annual review in April 2014, the CSE Chair refused to discuss the recommendations in the evaluation which the district ordered.  We only agreed upon placement and nothing more.  His IEP has not been updated to reflect new goals and attending to the significant deficits in working memory.

Yesterday, we had a meeting to discuss the recommendations in Dr. Rivera's report.  The meeting only took place because I asked for it!  When the district planned to act on the report and recommendations is anyone's guess.  I knew it couldn't wait any longer and I had to see what the district will do for my son in his current placement.  It was discussed by the IEP coordinator from my son's out of district state funded school that perhaps the placement isn't appropriate for him because they don't have any of the tools needed him and seem to have no interest in implementing the suggested tools although my son is suffering from significant delays.  Basically, I was given the company line:  "We don't do that here".

My son is 12 years old and operating at a 3rd grade level in reading writing and math.  The current state funded private school placement is not using research-based tools for much needed remedial workThey are using Common Core which is not appropriate for a student with so many deficits and shortcomings.  In addition, my son needs a memory training tool to help strengthen his working memory challenges.  The IEP coordinator suggested I find something "free online" to work his memory challenges.  Basically, passing the buck on to the parents!

Why is no one at the district or his placement alarmed by my son's deficits!?  Our children are the stakeholders.  Further, there are 9 recommendations in the psychoeducational evaluation.  The IEP Coordinator basically said, "good luck finding a school that will provide all 9 accommodations and if we find it to let her know because she will seek employment there!"  Most everyone in the meeting got a chuckle from her sarcastic statement.  My husband and I failed to see the humor.  This is very serious.  It is so serious that had the district stepped up to the plate 6 years ago, maybe yesterday's meeting would never been necessary.

Yesterday's meeting was adjourned and expected to reconvene in 5-6 weeks!  Again, more delays while my son continues to struggle.   If I'm forced to go to due process, it will be a financial hardship.  The district once again has failed to provide a FAPE for my son by not aligning him with the appropriate setting, accommodations and necessary tools to help him be successful.

I believe I have been more than patient waiting for this school district to step up to do the right thing. Unfortunately, all this waiting is at my son expense.  He can wait no longer for the adults in charge to do what is right for him - provide the necessary research-based tools and supports.   I am prepared to do whatever is necessary in order for my son's educational needs to be met as according to the law.  In this regard, the school district has failed at Child Find in the face of extensive documentation by those who are experts in the field of Autism Spectrum Disorders.

~ This is my story and I will continue to tell it for whatever it is worth. ~

"By failing to prepare, you are preparing to fail."   ~ Benjamin Franklin


Friday, February 28, 2014

Hurry Up and Wait or Applying for the Medicaid Waiver

"Bureaucracy expands to meet the needs of the expanding bureaucracy.” ~ Oscar Wilde.

Last week, I received the long awaited letter from the DDSO about my son's medicaid waiver application.  Basically, the letter stated my son is now eligible to "begin" applying for OPWDD services.  To me, it was one of the same - he qualified for the medicaid waiver.  I fire off an email to the intake worker telling her how excited I am for my son and how do I go about getting services for my child?  Quick response:  Ahhhhh, wait a minute.  Do you hear the sound of a screeching halt?

One email leads to another to learn I need the assistance of a Medicaid Services Coordinator (MSC) to begin the process to determine eligibility of services such as respite and recreational programs.   However, first I need to have medicaid for my son.  Well, I have medicaid for him and have had it for him for the past several years.  In fact, when I submitted my entire packet for the waiver which is equivalent to a dossier, I voluntarily provided proof of the medicaid.  Why didn't the letter from DDSO indicate the need for an MSC as the next step in the process?  And, further, why didn't it automatically include a listing of MSC's to select from?  That would've been so much easier and far less confusing.

Although there are layers upon layers to navigating this system, things are made far more complicated than it should be.  In fact, when I received medicaid for my son, why was I not given information of the waiver system to make an application for my son?  Why are these agencies not working in concert with each other?  All of the agencies are state funded yet there is a gross lack of orchestration that in theory could make things easier and more manageable if each were communicating with the other. 

“The single biggest problem in communication is the illusion that it has taken place.” 
~ George Bernard Shaw

Finally, I connected with a potential MSC.  She was very helpful and persistent.  In fact, although I have the letter stating my son is now "eligible" to apply for the OPWDD services, she insisted I didn't have all my ducks in a row yet.  She did initiate contact with the intake worker at the DDSO to discover that yes, I am eligible to recruit the services of an MSC!  Oh my goodness!  For a couple of hours, I was on an emotional roller coaster ride.  One would think by now, I would be used to it -   that it's just par for the course because nothing about these systems were made to be easy.  I told my potential MSC, that it should be straight forward like following a recipe.  First you do A, followed by B and then C and so on and so forth.  "Oh, no... this is government and governments don't flow in a systematic manner."  Of course, I have to admit I might have confused some caseworkers because I had the medicaid piece in place.  Sort of like putting the old cart before the horse type of thing.  If things were only explained to me, I would've followed protocol but in truth, my son was always eligible for the medicaid because of his disability.  I pursued what I considered what he needed without having knowledge of all the other related pieces and systems - whew!  It has been a long, up hill road to climb but I'm getting there step by step.

So now I wait to begin this new process and hope my son will receive the services he needs as we work toward self determination for him.  He is only 12 but the process began yesterday - that day long ago when we learned beyond a doubt he has a developmental disability.  The goal is for him to be the captain of his own ship as he will need to ultimately learn to navigate these waters that often do not run smoothly and can be down right confusing.

"We are taught to be ashamed of confusion, anger, fear and sadness, and to me they are of equal value as happiness, excitement and inspiration."  ~ Alanis Morissette