Capo Settles Special Education Suit for $130,000

A high schooler diagnosed with chronic fatigue syndrome and his parent sued the Capistrano Unified School District over disagreements about when he should return to campus.

The is paying out $130,000 to settle a lawsuit brought by a student who was forced to attend school despite a debilitating condition.

The 17-year-old suffers from chronic fatigue syndrome to the point that it affects his strength and alertness. He had been provided at-home instruction before the district "unilaterally" decided he should return to campus, according to court documents.

The district's Board of Trustees voted 6-0 last week to settle the lawsuit. The money is to go into an educational trust for the student to use through May 31, 2016.

The Lawsuit

The suit was filed by the student’s lawyer in federal court in July, after the Sheriff's Department declared him truant and threatened his parent with prosecution.

It was brought under the federal Individuals with Disabilities Education Act, which requires school districts to provide a free and appropriate education for all students, regardless of their health and abilities, as well as other state and federal anti-discrimination laws.

The student has been eligible for special education services since 2007.

Since then, he has received varying levels of home instruction from the district. Disagreements over whether he should transition back to school began in 2008, the start of numerous meetings with input provided by the family's doctors as well as an Orange County Health Care Agency psychiatrist who diagnosed the student chronic fatigue and immune dysfunction syndrome.

Disagreements Over Education

In September 2010, the student agreed to attend partial days, three days at week at a local high school with supplemental home instruction for three hours a week.

"However, a chance of circumstances occurred whereby the minor was and has been unable to sustain regular attendance on campus due to his fragile constitution and the additional challenges he's had with flu and sinus infections," the lawsuit states.

A consulting doctor recommended he begin attending class five days a week, so long as a cot was provided in the nurse's office and that he be allowed to go to class in his pajamas and be escorted by campus security to the nurse's office.

A month later, the district informed the student's parent that it was "now unilaterally changing the minor's placement to five days per week and the minor's home instruction services would cease as of Feb. 4, 2011."

“The minor claims the defendants acted with deliberate indifference when they, against his treating physician’s advice, unilaterally decided to cease home instruction and demand he attend a public school campus five days per week,” the lawsuit states.

Marly Silverman October 07, 2011 at 05:57 PM
Parents with Autism do sue and there is the reason why children with autism are now receiving a better school environment. Parents of Autistic Kids Sue Philly School District | NBC Philadelphia www.nbcphiladelphia.com/.../Parents-of-Autistic-Kids-Sue-Philly-Sc... Jun 21, 2011 – Four parents filed a lawsuit against the Philadelphia School District, claiming that the district transferred their children to different schools solely ... Parents of autistic student sue Allen School District over excessive ... www.setexasrecord.com › News › Federal Court Parents of autistic student sue Allen School District over excessive discipline 9/15 /2010 9:30 PM By Michelle Massey, East Texas Bureau. SHERMAN-The... Ethic Soup: Parents Sue School for Arrest of Autistic 8-Year-Old Girl www.ethicsoup.com/.../autistic-8yearold-girl-arrested-and-jailed-for-t... Jul 17, 2009 – Parents Sue School for Arrest of Autistic 8-Year-Old Girl ... from their local school district, but also special consideration for their special needs. ... Parents of autistic child sue school district for banning service dog ... www.justicenewsflash.com/.../parents-autistic-child-sue-school-distric... Aug 20, 2009
Marly Silverman October 07, 2011 at 06:12 PM
continued... Parents of Autistic Student Sue School District Over Bullying ... www.disaboomlive.com/.../parents-of-autistic-student-sue-school-dist... Jan 7, 2009 – Showalter Middle School, Tukwila, Washington The parents of an autistic student have sued their son "John"'s former school district for $1.5 .. Continued.... Autism has a huge spectrum and so does ME/CFS. There are autistic children who function well in all environments and there are others who may never recover and will be needing assistance their entire lives. Does it mean we should abandon them? Absolutely not! The same applies to children with ME/CFS and other NeuroEndocrineImmune diseases such as fibromyalgia, chronic Lyme disease and environmental illnesses. The similarities can be striking. The bottom line is and since it seems that many are concerned about money and resources. I submit It would be wise to advocate for ALL children. So every individual child can be given the care, protection and chance at success even when limited by their health and developmental challenges. News: Parents of autistic boy sue Tukwila School news.deviantart.com/article/73800/ Parents of autistic boy sue Tukwila School. `Helewidis :iconHelewidis: ... I can honestly say the education system failed this individual. ...
Esther Siebert October 07, 2011 at 08:34 PM
Hi Lori, I'm so sorry to hear how ill you are and especially that your ME began in childhood. I have been more fortunate in that although I have severe ME, I didn't get it until I was 39. I am also more fortunate in that, unlike most of the people in my support group, I have a husband who stayed with me, thank G-d, and earns a living and provides health insurance. And does just about everything now and when my 3 kids were young. Because I was staying home when I became ill, taking care of a new baby, a 4 year-old, a 13-year old and my 80 year old Dad with Alzheimers, I was ineligible for disability. I would have been grateful to receive it, but I was in the wrong line of work. Many of the members of my support group are alone with no source of income and no health insurance except what they get from disability. I sense in understanding your experience personally and what you've written that you may not have found peace in your circumstance. If that is true, I might suggest that you read "How To Be Sick" by I think Toni Bernhardt. Not good cognitively today so not sure about the author. It has helped me a lot and many other people as well. It takes a lot of energy to be full of anger and self-pity; I know cause I spent years doing it and still do from time to time. I would reach out to you personally but I don't know how to do that. I hope you have a support group of fellow sufferers.
OC Mom October 07, 2011 at 08:34 PM
Mary, When I said Autistic parents aren't suing I was talking about CUSD not parents around the world. Also, have any of you considered that the schools can't be all things to all people. The quality of education received by the average student without an illness is suffering due to the high cost of accomodating all of the various students with varying degrees of special needs. I don't know that I have an answer other than having a seperate school with specialists to work with the kids who need the most help and accomodations. There was a recent article on Patch that vandals damaged R.H. Dana school in Dana Point that did provide some of these services and that is a shame because our schools are hurting enough without vandalism.
Lori Ellis Jones October 07, 2011 at 09:29 PM
Well said Marly. My parents faced court due to how much school I missed. It was only do to my counselor and teachers knowing me and my family and me managing to still be a high academic achiever that they dismissed it. Esther, thank you. We manage fine. I just take a different view now than you. I didn't used to. But after losing many friends to this disease and after many battle scars and seeing so many treated so injustly I came to a point where I decided nothing is going to change if nobody speaks up. With 30 plus years experience dealing with CFS personally it seemed my turn to speak up. I've been a long time "guinea pig" for the treatments. And to an extent OC mom is right about many medications...they do often just make things worse. They are not however the cause. I was very sick well before they started trying anything like that. I went thru years of them believing it was just one virus after another. Then mono. Eventually I was diagnosed. And there are times I have not taken any medications and I am still very sick. The medications offered are merely bandaid treatments and not cures..at least initially, until systems begin shutting down and they have to treat some things.
Lori Ellis Jones October 07, 2011 at 09:29 PM
OC Mom, if it is acceptable for you to say derrogatory things about this struggling family then I wouldn't think you would take offense to me suggesting that it sounds very greedy to do so when you have your health, and you could be stepping up in your school and doing things to help them raise funds to accomodate ALL children rather than sit back and complain how the families who are already struggling through no fault of their own are stealing (when it is actually just as much theirs) from your perfectly healthy children who are quite capable of making due with WHATEVER is offered. Disabled kids can only dream of that. There is a lesson there.
Lori Ellis Jones October 07, 2011 at 09:32 PM
*Note before anyone says anything about my typos..I'm sure they are there. It's just an example of struggling to think. I had another seizure just over an hour ago.
Alison Canny Burke October 08, 2011 at 01:28 AM
Alberto, obviously you have no idea what this illness really is about. It's name is what make sit seem likes it's just fatigue. I am here to tell you that I as an adult has suffered with it for 19 years now. It is like having a sever case of the flu, night sweats, EXTREME fatigue, dizziness, swollen lymph nodes, on and off fevers, digestive problems, low blood pressure when standing that can make you black out. Many other symptoms as well. It is called Myalgic Enchephalitis in the UK. Maybe that name will make you believe it is real. We have been trying to change it here in the US for years now. If you had a child with this horrific illness i think you would understand that what you said is demoralizing and heartless. I hope you would educate yourself on this illness and hope that you or your children don't ever contract it because it is def becoming more common. Because of the horrible symptoms and not much research done on this illness, people have committed suicide especially when they feel like people don't understand or believe them.
Alison Canny Burke October 08, 2011 at 01:40 AM
OC MOm, you really don't know anything at all about this illness. I hope you are not really a mother because then I feel real sorry for your children. Everyone in this world is not healthy, there are many different illnesses out there that you don;t know anything about, until you do, you should not comment, especially on a CHILD whom is very, very ill.....NOT just tired. Look up Myalgec Enchephalitis, that';s what it is called in the UK. MS wasn't called that fromt he beggining either and people thought those suffering with that were not really sick because it was and still is for the most part an invisable illness. (That means you can't tell by looking at the person) Devastating to have a child be this ill and talked about like this by a so called mother. You should be ashamed of yourself !!!
Marly Silverman October 08, 2011 at 02:08 AM
OC Mom, the examples I provided are just a few and they are not parents around the world. They are parents in the U.S. Law cases (suits) create precedents that enable equality and in the situation of parents with children with Autism helps plenty. I think your concern go more toward your local resources and that they are finite. I share this concern too. However, in most school systems taxes come from property taxes levied in home owners, then state funding given for each child enrolled, then federal funding given to special program that endorses federal initiatives and rightly so is Autism a well deserving federal initiative. They also come from bonds being sold in the financial markets. Often corporate donations also help schools across the our country. There many reasons why children with special needs are in a regular school. Some are noble. Some create a difficult environment for teachers and students. I am fully aware of that. The question still remains what is the best way to address these issues. If a school system cannot abide by some educational guidelines they will not receive additional funding. If the state is bankrupt, often the school systems suffered too. This concept of not paying taxes and leaving us without much needed infrastructure is foolish. Yet, I want accountability of how taxpayers money is being spent. The key is balance. BTW, my name is Marly, often folks assume is Mary.
Marly Silverman October 08, 2011 at 02:25 AM
Lori, I admire your courage to speak on such painful issues. One good reason why medications can be a problem is that we are yet to see a medication specifically for ME/CFS. The medications that adults are prescribed are "off label" and these medications should not be used for children and young adults but they are used anyway as "last resource" as parents and physicians try to stop the suffering of children, teenagers and young adults. Often they mask symptoms or create new ones without fixing the underlying cause. Recently the coalition4MECFS.org (in which PANDORA is a member) has asked the National Center for Health Statistiics to reclassify CFS as a neurological disease. We believe this will happen soon and it will be a huge win for future research, patients and families across our country. Also in Nov 8-Nov 9, there will be another meeting of the CFS Advisory Committee (CFSAC) meeting in Washington DC. The CFSAC is a federal committee within the responsibility of the Secretary of Health created to address CFS issues in our country. We need young individuals with ME/CFS to share their story and to share the disrespect they experience in forums as this one because of the lack of understanding of what ME/CFS really is by the public at large.
Marly Silverman October 08, 2011 at 02:33 AM
Alberto your comment is ignorant in all accounts. I am afraid to say it might actually reflect the sad state of our overall educational school system. I hope you reconsider your careless and callous comment. It would show character and maturity if you do.
Marly Silverman October 08, 2011 at 02:42 AM
OC Mom, Unfortunately there is not YET one single FDA approved drug to treat ME/CFS. Physicians may prescribe "off label" drugs but often children suffer from POTS - "Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia,[1] more specifically orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia." They often also have neurally mediated hypotension (NMH)- "Dr. Peter Rowe is a pediatrician and associate professor of pediatrics at Johns Hopkins University. He and his colleagues in the departments of pediatrics and cardiology have been studying adolescents with chronic fatigue syndrome (CFS) and neurally mediated hypotension (NMH). NMH (also called vasodepressor syncope or neurocardiogenic syncope) is a blood pressure abnormality brought on by a nervous system reflex. It can cause symptoms such as chronic fatigue, light-headedness, recurrent fainting, malaise, nausea, exercise intolerance and cognitive dysfunction. Dr. Rowe and his colleagues at JHU have linked chronic fatigue syndrome and NMH through their clinical observations and through tilt table testing. Their paper, "Is neurally mediated hypotension an unrecognized cause of chronic fatigue?," was published in Lancet in March 1995. to be continued...
Marly Silverman October 08, 2011 at 03:10 AM
OC Mom, why would you even suggest that "The district is just trying to make sure the child is educated so that we won't be paying to incarcerate or support him on welfare or disability for the rest of his life. Unfortunately, it looks like the taxpayers will probably be supporting him through disability for the rest of his life" Why would you suggest that seriously ill child with ME/CFS, which is sometimes fatal if left untreated, would become incarcerated or be supported by welfare or be on disability for the rest of his life? Where is your compassion? I sincerely hope that this statement is simply based in the ignorance of the issues in question, not a lack of compassion in your part. If this young man was your child what would you do? to be continued....
Lori Ellis Jones October 08, 2011 at 12:26 PM
Marly, even now in the area I live in there are no well informed doctors. I consider my doctor a good doctor but for example I've started having new and worse symptoms. As mentioned above, grand mal seizures, horrible headaches. Not migraines, I've had those all along, these hurt as bad if not worse but I'm not light and sounds sensitive any more than with a bad headache, numbness in my hands and feet, trouble grasping things, typing this, feeding myself etc...hello? a pattern? NEUROLOGICAL right? So what does she say? That I need to see a CFS specialist..a Rheumatologist. <sigh> At first I went along with making the appointment but then I canceled. I'm having to educate her. Thankfully she is willing to learn. I just learned about the meeting you're talking about a week ago, too late to register to testify or I would have. If it's still possible let me know?
Lori Ellis Jones October 08, 2011 at 01:20 PM
Marly I don't know if it's important, I do have the diagnosis of FMS as well. I always considered the two one and the same but then I have had both all along so for me I don't know what it's like to have one without the other. It wasn't until, as an adult I had FMS friends who were able to manage their symptoms with exercise that would leave me completely wiped out and wondering how in the world they could do that? That I began to realize that there is a difference.
Esther Siebert October 08, 2011 at 05:23 PM
Hi Lori, Please don't mistake my personal acceptance of my situation for today for silence in the public arena. I send in testimony for hearings, vote for ME charities to receive funding and send in comments in discussions like this. I also check into possible treatments through my ME doctors in the Bay Area. However, I too am no longer willing to be a guinea pig and unfortunately they don't know how to treat our illness at this time. So I concentrate on making my life the best it can be for today. And I hope that they will find something to help us tomorrow. I commend you for speaking up and I will continue to do so as well.
Esther Siebert October 08, 2011 at 05:32 PM
Hi Marly, Thank you for all of your service to the ME community! I understand that in addition to the request for a neurological classification, we have asked for the name change to ME. What can we do to make this happen? It would be wonderful if someone like Lori who is having seizures could testify. I haven't had seizures but have lesions on my brain and abnormal brain shrinkage. Also, I believe I've been voting for you on the Jewish site to get more funding. Perhaps you could share how others can do that.
Francesca Owens October 15, 2011 at 12:54 PM
I have an idea for Alberto Barrera... come on over and let me give you a blood transfusion, OK? Want my infected blood? I have active viruses for HHV-4, HHV-6, and Coxsackie 2 Virus. I became fully disabled 5 years ago from ME/CFS - Chronic Fatigue Syndrome... I think after I give you my blood in a transfusion, and we wait a few years until they activate, and Yes, they can give you the money too! These jokes are just not funny to those of us who have lost our functional lives... SORRY IT'S A SORE STOP... http://www.youtube.com/user/kaiserMECFS?feature=mhee http://kaisermecfs.blogspot.com/
Wrblr Fvtwlv October 15, 2011 at 02:17 PM
The district got off easy. Once you get the sheriff (?) involved, and embarrassments like trying to get ill kids to attend in pajamas... if I were a rich relative, even if I could pay the kid's home schooling, I'd find a good OC lawyer and sue the district's PJs off. Some blissfully ignorant comments here: the tree isn't down because I never saw the lightning. Science may not agree as to whether a virus starts ME/CFIDS alone or in combination with genetics or environment; but the abnormal exercise and activity tolerance, multiple neurological problems, over/underactive immune systems, and is exponentially well documented. SoCal was the best place for me with this illness. I was economically forced out, and am a sicker, less productive member of society because of it. Trouble was, too many around me felt "entitled" to the new norm: an SUV and a house priced two to three times what its worth. And I hate to say it, but out fly the rest of the whites, and in come more Mexicans who, whether they sit on welfare or bust their tails like most whites can't imagine, can enjoy a happy living without that crap. Don't blame sick or special needs children for pricing yourselves out of the American Dream.
Marly Silverman October 15, 2011 at 02:43 PM
Lori, I am sorry it has taken me down to answer your reply. I am down with a major viral infection.I am pushing hard to get better. And here is the sticky point where many do not understand that despite the serious health challenges we do our best to get better. Lack of qualified and knowledgeable treating physicians is a major hurdle for ME/CFS and (other NeuroEndocrineImmune diseases) as well. In the entire state of Florida there is only one ME/CFS specialist. For Fibromyalgia we are a bit luckier, but since there is often overlapping in these two diseases as well as overlapping with Gulf War Illness, the goals are to educated immunologists, neurologists and rheumatologists in these diseases as well. This hurdle is further magnified by the fact that Medical schools in the U.S. do not teach them in their curriculum. New doctors leave medical schools without substantial knowledge. At best with a general knowledge of the names of these diseases. The IACFS-ME Association www.iacfsme.org is a professional org dedicated to ME/CFS, FM and other related illnesses. They meet every two years. The last one in Ottawa, Canada.
Marly Silverman October 15, 2011 at 02:46 PM
Lori, Yes, there seems to be a difference between CFS and FM. Somehow in the course of both, a ME/CFS develops FM or a FM patient develops ME/CFS. Why and how this happens it is not clear. Research is needed to find the differences and why the similarities. The same happens with Gulf War illness, MCS, and chronic Lyme disease (NeuroEndocrineImmune diseases).
Marly Silverman October 15, 2011 at 02:58 PM
Hi Esther, The name change of CFS to ME has been on the table since at least 1985-88. When the CDC and a group of international researchers and physicians adopted the name CFS, it created a cascade of events that have been in all accounts prejudicial to CFS patients in the U.S. CFS, in the U.S. is also known as ME. In 1991, the name CFS was further solidified in the ICD9-CM and in a chapter that is used for "vague and unspecified symptoms" meaning a chapter of we really do not know what CFS is, so to speak, although the research, physicians and patient advocacy communities did then and still have now presented a solid argument that CFS is and was ME. The creation of the name CFS has created a huge rift over the years of what ME really is and what CFS is. The re-classification of CFS aims to clear this issue once for all. I was nominated to the Jewish Community Heroes Award charity contest here is the link http://www.jewishcommunityheroes.org/nominees/leaderboard Wishing all a Shabbat Shalom!
Marly Silverman October 15, 2011 at 04:12 PM
Concerned parent, If these parents are suing and based on our experience in hearing and participating in parent's similar plights across the U.S., I would say that they had no choice. In the case of family in Buncombe County, NC. The family spent thousands of dollars in payments to a online/homeschooling company to teach their child. Even so, the county went after the parents and accuse them of "Factitious Disorder by Proxy," which did not held in court. Marly Silverman, Founder, p-a-n-d-o-r-a.org
Dianne Nelson October 17, 2011 at 03:29 PM
As a former travel agent I myself long for Hawaii and cruise ships - I remember how wonderful they were. However, as I am now disabled with FM/CFS, they are a dream I have for when I am better. As it stands now I could never physically manage a vacation like that. I would spend the time crashing in bed. And I am in much better shape than this student appears to be. Although I abhor the need for this suit, and on dwindling funds, I can imagine the need to have filed the suit. I think perhaps the pajama thing wasn't meant to shame the student but was merely their poor attempt at understanding his fatigue at getting dressed, and attempting to alleviate that need. (I could go on an on about that one but will refrain!) Also I wonder at the fact that the funds were limited until May 2016. What happens to them after that? There is the very real probability that the student won't physically be able to use them by that time!
Talex October 19, 2011 at 01:10 AM
I am the parent of a child with CFS/ME. After the school essentially failing in any respect to help come up with a reasonable plan to try to meet the needs of my son, I pulled him and homeschooled him through a virtual academy/charter school. This is our third year. He has undergone unimaginable numbers of medical tests and procedures to rule out any and all conditions that could cause him to be completely debilitated. The whole thing kicked off three and a half years ago with what we now know was a double mononucleosis infection. He started throwing up and didn't stop for almost 6 months. For anyone that doubts that this is a real disorder, please let me educate you. We have had doctors tell us our son is mental and making it up, that there's no such thing as CFS. We've had teachers, despite ample records and specialists' specific instructions not to do physical exertion, force our son to run a mile (he was flat on his back and out of school for two weeks throwing up). I am in process of reintegrating him into school under 504/IEP. Daunting. I have experienced so much ignorance, flat out hostility and denial from people when they ask why my son is white as a vampire with dark circles under his eyes and are told the reason. Like any parent, I will do what I must to ensure my child has every reasonable opportunity to receive an education and interact as normally as possible with kids his age. This is the federally protected right of any US Citizen between 5-18.
Francesca Owens October 19, 2011 at 06:18 AM
Talex, I am so sorry to hear a child must suffer with this illness. I want you to know, I pay 100% out of pocket with no reimbursement and fly down to Florida to see Dr. Nancy Klimas. IT WAS WORTH VERY $ I couldn't afford to pay to go down there. I rented a car, hotel, and medical fee! The natural killer cell tests I got the results on yesterday were horrible and we are starting on immunivir and Oxymatrine, I am already on Valtres and naltrexone. I tell you this only because I want you yo consider going to a real expert. I have been improving but it is not an easy road. Good luck to you and your child... and think about going to a leading expert should you not already have one. Ciao Bella, Francesca http://www.youtube.com/user/kaiserMECFS?feature=mhee#p/a/u/1/nsz7zudrl7k
Wrblr Fvtwlv October 19, 2011 at 11:56 AM
If you didn't get my board message, see http://www.hhs.gov/advcomcfs/notices/n101811.html and read or watch the video for this May's CFS Advisory Commitee meeting, Day 2, http://www.hhs.gov/advcomcfs/meetings/index.html.
Lori Ellis Jones October 22, 2011 at 05:09 PM
I've been following the latest new concerning the new cancer drug which holds great promise for treating and in some cases even curing CFS/ME discovered my norwegian scientists, Rituximab. http://www.research1st.com/2011/10/19/rituximab-trial/. Up until now the name bothered me but for the most part I just considered thought of it as "A duck is a duck no matter what you call it" sort of thing. Although I did always wonder WHY? Why the big deal on the part of the Govt agencies as far as changing the name. Then it hit me, in places such as Norway and the UK and elsewhere they take ME much more seriously. THEY recognize how severe it can get including fatal. (It is listed on death certificate(s) ). They have also found pretty clear evidence that it is indeed an autoimmune neur-endoctrine disease. They have found-Ugh Foggy foggy day, it's in the link I believe- markers in the blood and in autopsies that there is clear damage done by the disease to parts of the spinal cord (again read the article to be precise). And you can google Sophia Mirz for more info. The thing is the tests they can do to help get a more precises diagnosis are very technical, (not your run of the mill, can be done anywhere tests) and they are quite expensive. Put 2 and 2 together...with a pandemic of CFS(ME) suffers here, if they changed the name to formally agree that it is indeed ME, the costs to them would be phenomenal
Lori Ellis Jones October 22, 2011 at 05:12 PM
Marly-I've asked all over and not got a reply. Would it be of any benefit if we wrote letters to arrive at the time of the meeting, telling our own individual stories? (We would need an address if so) Maybe if they got bombarded with hundreds of thousands of letters along with the verbal testimonies it might get the point across? Just a thought. If you think it would help you can either let me know here or email me at BlondieLJ@yahoo.com . I'd be more than happy to help get the word out.


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