Saturday, January 17, 2015

"Are You Serious?" Awards - Volume XL: The Only the Rich Will Have Rights Edition

If you have a friend who is in need of food and clothing, and you say to him, “Well, good-bye and God bless you; stay warm and eat hearty,” and then don’t give him clothes or food, what good does that do? ~ James 2:15-16, TLB ~

In my role serving parents raising kids with chronic health conditions and disabilities, I am frequently asked about school issues and advocacy.  Sadly, it is all too common for parents to find themselves in an us-versus-them situation with their local school, rather than working as a team.  Educators are not always on the same page with parents.  Schools all too often try to do as little as possible to comply with the law without overtly violating the law.  

Therein lays the festering wound behind this week's "Award."  Actually, there are no winners in this week's focus.  Everyone loses because of the situation I am bringing to the fore.

  Are you SERIOUS?!

Photo image courtesy of Paul Gooddy via FreeDigitalPhotos.net
A January 14, 2015 post in Disability Scoop, cites the results of a nationwide survey published in the Journal of Autism and Developmental Disorders is summarized.   While the intent of the Individuals with Disabilities Education Improvement Act of 2004 (IDEA) may be to legally provide the remedy of mediation if a child's IEP (Individualized Education Plan) is not being satisfactorily managed between school and parents, in practice, this study reveals only families with money typically exercise that right.  As written, the IDEA provides procedures for written notice, complaints, due process, appeals, and ultimately mediation if prior steps have not resolved the issues between parents and the school.  According to this recent study, those families making under $100,000 simply cannot afford to take the final prescribed course of action.

"The playing field needs to be leveled so that lower-income families have access to pro bono and sliding-scale attorneys who can help them file, if that’s something that they need to do," noted University of Illinois' Meghan Burke, one of the study's authors.

No kidding!

While the results of this study, are not surprising to me, it breaks my heart in affirming what I already knew to be true.  Parents who are not successfully working out educational strategies with their school are only able to press the point if they have the money to hire an attorney.  Due to the constant added costs of caring for a child with chronic illness or disability, very few families have the additional funds to pay for that needed legal help.

Conversely, we have also served affluent parents who were taken great advantage of because advocates saw an easy opportunity to pad their pockets.  Theses families were left with lighter wallets and no positive resolutions with their schools.  It is beyond tragic.

In my mind, I have to wonder why no one has yet brought people together to assure uniform quality standards for advocacy and mediation.  Is this an elephant in the room that people fear to confront?

When special education is working well, everyone wins -- the child, the educators, the parents, and the wider society.  The recipe for success plays out as persevering teachers lovingly believe in their students, connecting and working with the parents of these students as a team, and the student blossoms to share their full potential with the world around them.

It is clear that until we get the mediation gap between the haves and have-nots resolved, the educational system will be more inclined to mistreat and neglect our less financially secure students.  We would do well as a society to stop foolishly leaving so much tremendous potential behind because monetary obstacles leave parents with no recourse.

~ Barb Dittrich

6 comments:

  1. Oh my goodness, Barb, so well said. Amen...

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    1. Thanks, Tammie. I know SO many of our parents will relate to this! It just breaks my heart. We put together a great structure to handle troubles with school, but then failed to make sure that we make it financially possible for ALL students to use the structure put in place.

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  2. We have just experienced the fallout of this dilemma first hand. Our 20 year old autistic (among many other issues) son "graduated" last Spring with a "diploma" though he still cannot do 3rd grade math! At the IEP near the end of the school year I (again) raised the issue of Transition Services and provided several "age appropriate transition assessments" to show areas where he still needed significant help. By the way, the school has done Zero Transition goals or services over the years even though I have asked in writing for such Legally Mandated services to be provided. They once again refused, and also refused to reconvene the IEP to address outstanding issues and my son's need for clarification from IEP Team Members.

    The bottom line is that we ended up filing a Due Process Hearing Request near the end of 2015...and I had been working on the issues related to that filing leading up to the IEP and before filing, for about 8 months preceding it. We tried to find an attorney or legal advocate including returning to the University based "poverty law center" who had assisted us a decade ago when we had been compelled to file for Due Process, again as a last resort. The law center said no; our state's Protection & Advocacy organization said our situation was too complex (after working with us over the phone and email for a month) so no; a state level Autism Organization did basically the same thing as P & A.

    We are in a lower income situation and our son is on SSI, Medicaid, and Food Stamps so he personally, a legal adult Not under guardianship, is definitely low income. I went through our state's Bar Association (phone & web) and sent emails to every attorney listed who had Special Education expertise and also did pro bono work...no takers. We contacted another university's disability law clinic--no. I was in the process of trying Legal Aid (who seemed unlikely to have special education expertise but would at least be free)...

    Anyway, a relative offered us a sum of money that could enable us to "hire" legal advocacy for the filing of motions, oral arguments, and conducting the hearing itself. We visited this attorney's office and he basically told us it would cost us at least $20,000 to have a lawyer see us through the Hearing, which of course (even with help) we didn't have.

    In fact, in our state (Michigan) the school district attorneys are now habitually going after families and their lawyers to get attorney fees, claiming the filings were "frivolous" even when they are clearly not. They also apparently get $100,000 insurance money from the taxpayers whenever someone files Due Process so they can pretty much Always defeat the little guy (who already has the burden of proof and a major uphill battle). The lawyer examined the school district's lawyers' motion to dismiss (where they either denied or ignored every issue we raised) and seeing that they hadn't already tried to hit us up for attorney fees said he would talk with them and get the case dismissed (like he was doing us a favor by Not allowing the Significant Issues we raised in the Due Process Hearing Request get a "fair" hearing). I thought we were there to hire him to represent our son, but he talked as if we decided to proceed Josiah would be on his own in court...

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  3. Part 2

    The financial component of what would likely fall on our head if we proceeded, our direct attorney costs and the likelihood of being "sued" to pay for the school's attorneys, regardless of the legitimacy of our issues really scared most of the other family members at the meeting. My husband was afraid that if we proceeded we could lose our house (though not having $20,000 meant, apparently, not proceeding at all)!

    So instead of helping us with our case "our" attorney (who at least lowered his fee) appeared to never read our actual hearing request (it was nearly 40 pages long after all), nor did he review some of the supporting documentation I sent him electronically to show "proof" of what was being contended, nor to offer us any advice or analysis on the "merits" of our case, or lack thereof. Needless to say I was, and basically still am, furious. I felt as if the 15 plus years of Wrightslaw and other advocacy training and self education I've attained was pointless. I could have rolled over and played dead at virtually every IEP meeting we've had and gotten virtually the same results!

    The upshot was that our disabled son was pressured to sign a "with prejudice" dismissal of the case request so that the case would just go away...and we were all supposed to be grateful that at least the school wouldn't try to make us pay for their lawyers! How is that protecting the rights of the disabled, especially the lower income disabled (& their families)?

    We had and still have extremely serious and legitimate issues, many of which have been problematic for years, some going back to 2001 when the school disregarded autism and outside (hospital based) neuropsych testing showing my son's IQ to be "low normal" and they decided he had an IQ 30-40 points lower than the outside testing showed...put him in a class for mentally/cognitively impaired students, didn't address his autism, denied him access to general ed in any meaningful way until our prior hearing request (which finally got him a Para Pro, which had been a doctor's written recommendation from at least 2000), refused to re-mediate his areas of learning disabilities because they preferred to use their significantly lower iQ during the "severe discrepancy" LD era, even though his math LD met that more stringent requirement even considering the IQ they claimed he had...and many other things.

    The irony is that we would probably never have pursued Due Process this time if they had been willing to Finally address his Transition Needs. I had mistakenly thought that that area got short shrift when other heath crises (like a Brain Tumor and eventual Liver Transplant) took preeminence. Apparently it was the same as always, obvious needs that would be disregarded, denied, or dismissed...

    I could go on at even greater length here, and I'm sorry for going into this so much, but it is still very fresh and raw. In fact, today was to be the day the Hearing was to have happened/started. At this point I'm trying to regroup to find another way to get my son's significant needs addressed when a system tasked with caring for these issues was extremely derelict in its duties. Given that Michigan is usually quite generous, in that it provides Special Education through age 26 (unless one "graduates") it is even more frustrating.

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  4. Part 3

    My son's doctor has said that kids that have high-functioning autism are the one who aren't getting their needs met, not in school and definitely not in the adult services industry. If you are high enough functioning to handle the academics then they apparently completely disregard the independent living skills side of the equation. If you can't handle the academics then the "life skills" track means you never acquire anything like a high school education. If you examine the IDEA requirements for post-secondary transition you have to wonder where the "diploma" track kids will get those issues addressed if they are busy taking the course requirements for graduation...and graduating kids without high school skills and no transition services violates the letter & spirit of IDEA!

    Here's our bottom line, too weary over the years to step our issues up to the next level after the extreme exhaustion and years of dispute that accompanied our first Due Process request (that took like 2 years to resolve, when 60 days is "required")...overwhelmed by Brain Tumor & Liver Transplant issues that exactly overlaid the years when Transition should have been addressed (and initially when we should have confirmed that the Settlement terms from the first Due Process request were followed--they weren't entirely). Being lied to by school staff that you don't get functional needs met when you're on the diploma track and being too beaten down by the IEP process (always backed up to the end of the school year so there's no maneuverability for "procedural safeguards") to start the battle all over again when school starts. Being unable to find virtually Any Advocacy to assist us over the years so living with the "as good as it gets" aspect of the IEP that was, from my perspective, No Good At All (and Never Legally Compliant ANY Year). When finally filing Due Process again, as a last resort, being told that because you don't have deep enough pockets to absorb attorney fees for your son AND the school you can't/mustn't proceed.

    And here's the real kicker, since our son is Not under guardianship, if you cannot find an attorney to represent him then HE MUST ACT AS HIS OWN ATTORNEY. So in order to vindicate our son's rights he must be mightily violated by the system in order to proceed. Someone on the spectrum, with communication, attentional, and processing issues will be forced to act as his own trial attorney in a hearing. He doesn't have near the breadth of understanding of special ed law, or even his own educational history, that his mother does, but she cannot speak on his behalf! The attorney assisted that the hearing experience would virtually destroy Josiah, being made to listen to people he cares about potentially lying and saying horrible things about him (even if they didn't believe them but in order to protect their jobs). His twin and father were convinced to "quit"...Josiah and I, not quite so much...

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  5. Final Part, Part 4

    We are praying about where to go from here, but it is an incredible heartache to me that we cannot even, apparently, have our legitimate issues heard nor obviously afford to find someone to proceed. Now it may be that even if we found someone free who could proceed we cannot carry on because of the "with prejudice" dismissal (which apparently means cannot be brought up again and is used to dismiss a case on the merits--which were never addressed in any venue, not even our alleged "legal representative"). Being told by the attorney that if we'd come to him a year ago he could have "kicked them in the..." but now it's basically too late. "You can't do anything to help your son...but I really hope you'll become an advocate to help others...you know the special ed law better than the administrative law judge who would have decided your case"...what does a parent even say to news like that?

    Thanks for letting me vent, and thanks for writing about the many issues families face. I only just found your blog after reading your recent article on Rare Diseases and Not Being Alone that you published through Special Needs Parenting. I am planning to read many of your postings in my process of moving forward from this devastating disappointment.

    Blessings In Christ,

    Valerie Curren

    PS I recently started blogging at SpecialConnections@WordPress.com and would love to have you stop by! Best Regards!

    Also, I've been writing a medically focused CarePage.com blog mostly emphasizing Josiah's needs for several years now, trying to cope with Brain Tumor & Liver Transplant for a while here:

    http://www.carepages.com/carepages/JournalingForTheJazzman/

    And my son Josiah is working on finding his own voice here:

    http://www.carepages.com/carepages/JosiahTheOvercomer/

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