Why doesn't my ds qualify for a 504?

[blessedwithboys]

I think I posted about this before, but I'll start over here.

Ds1 is in 10th grade and as of January, we finally have figured out all of his issues: narcolepsy.  Only problem is that the doctor won't officially put N in his records.  His records show "Idiopathic Hypersomnia".  The why of it is a long story and we will be re-doing the testing soon so try to change it to N officially.

Ds needs to take a Rx med each day as well as take a scheduled nap each day at noon.  There are other accommodations recommended by his doctor, such as extra time for tests and deadlines, late start time, and freedom to take breaks during monotonous lectures.

The principal and special ed teacher both say that he does not qualify for a 504.  They base this on the fact that ds is a high IQ gifted student who keeps his grades up for the most part.  (Occasional C's.  D's and F's are rare, but not completely foreign.)

The doctor wrote yet another letter detailing exactly why ds NEEDS these accommodations.  As a mom, I am not happy with "good enough".  I have known since kindy that ds doesn't perform to his fullest potential, but his decent passing grades are good enough for the school.  If the school won't give him a 504 from this last letter, the doctor is putting him on homebound for 11th grade so that he can try to get through the rough teenage bad-sleep years without having to be up at 6am for school 5 days a week.

Oh, additional details...I can't recall how long the school has to meet with me after I first hand in the doctor's recommendation, but it took them something like 5 or 6 weeks.  Also, they told me they are willing to let him nap without a 504, but he can't be behind a closed door, so he will have to choose between the clinic (right off the front office, very public and noisy, and the door would be open) and the preschool classroom (snuggled in on a mat between a couple of random 4yo's). 

They also refuse to allow a later arrival time.  I was told that ds is running out of available absences and that even with doctor's notes, they will report us to the truancy department before long.

What do I do?

[Wild Lupine]

How frustrating. From what you've described your son should definitely be on a 504 plan! I can see where the school might have difficulty finding space for a nap, but their recommendation of napping with the preschoolers is totally out of line for every one involved. 504's have absolutely nothing to do with IQ and grades.

It sounds like you might need to up it a notch and bring an advocate to a meeting with the school. Advocates are generally volunteers who are well versed in special education law and experienced dealing with school districts who need 'encouraging' to follow the law. A local agencies that works with children with disabilities should be able to recommend an advocate for you, even if the agency doesn't serve your son. You could also hire a lawyer, but an advocate is a friendlier, less costly place to start.

[RiverTam]

Talk to a lawyer. 

They're wrong. It's my understanding that to get an IEP, a child needs to have a disability that impairs their school function, but to get a 504 the child just needs to have a disabiility. It sounds like they're applying the IEP standard to a request for a 504 accommodation.

http://www.help4adhd.org/faq.cfm?fid=7&tid=34&varLang=en

[FAmom]

Call the OCR (Office of Civil Rights).  I've had issues with 504's, eligibility, accommodations, cr@ppy school people, etc.  You don't necessarily have to be interested in filing a complaint to call them, but when you talk to someone who knows the ins and outs of the 504 law, it can even help when you go back to address the school.  

It also doesn't hurt to kind of have the fact that you have consulted with the OCR as something you can use to back you up.

Schools are more worried about possibly having funding issues with an OCR complaint than realizing what complete jerks they look like by deciding they don't have to follow the law, or think they have more knowledge than the doctors of your kids.  

If I'm not mistaken too, doesn't special ed fall under the Dept of Ed?  I wonder if you could call the one in your state to get a contact at a higher level.  They've been known to be very helpful too.  

[buttercup]

I agree.  Because he has a disability, he can qualify for a 504 plan.  They are violating his rights under ADA by preventing access to services provided to everyone else.  By pass the principal and appeal to the director of the ESE department copying the School Board Directors and the school attorney. 

[Wild Lupine]

One more thought. Is your son in public or private school? Everything I wrote earlier applies to public school. I am not sure how the law applies to private school though. That could make a difference in what the school is saying.

[FAmom]

That's a good point.... public vs. private.  I think there are some loopholes though if the school receives federal money for lunches.  Then they would fall under USDA, and they require the law to be followed at least.  For some things, the USDA, and their forms, are spectacular for being able to turn into a school and showing them in writing that your child does indeed qualify because some things are in writing right on the form.  It is hard for school people to argue if it is printed right there on a federal form.  Not that it doesn't stop them.

BUT.... yeah, I think it is much harder if you are dealing with a private school.  

[Emmeline II]

Originally Posted by blessedwithboys 
Ds needs to take a Rx med each day as well as take a scheduled nap each day at noon.  There are other accommodations recommended by his doctor, such as extra time for tests and deadlines, late start time, and freedom to take breaks during monotonous lectures.

The principal and special ed teacher both say that he does not qualify for a 504.  They base this on the fact that ds is a high IQ gifted student who keeps his grades up for the most part.  (Occasional C's.  D's and F's are rare, but not completely foreign.)

They also refuse to allow a later arrival time.  I was told that ds is running out of available absences and that even with doctor's notes, they will report us to the truancy department before long.

What do I do?

504/IDEA

http://www.wrightslaw.com/advoc/articles/504_IDEA_Rosenfeld.html

When Schools Punish Sick Children Who Miss School. "Public schools are required by law to accommodate the health needs of students. The plan to accommodate health needs may be called a health plan or a 504 plan."

How Can I File a Section 504 Complaint?

Does Narcolepsy Fall Under Iep? - Narcolepsy Network Community

Narcolepsy Network, Inc.

[Tinkerszs]

Please find an advocate. We have had nothing but trouble with the school and my son's autism diagnosis. Our advocate is amazing and has helped us a lot. Schools also stop ignoring parents once an advocate shows up.

[motherhendoula]

I wish i knew more about this..my daughter has a 504 in place after her Crohns Disease diagnosis ...the school has been MORE than accomodating - including allowing my daughter to leave school at noon and only attend 'core' classes - she is also in the 10th grade.  It was my understanding that the 504 started with the doctor and the school HAD to accomodate .... you might need to be more agressive with this particular school - good luck!

[Linda on the move]

If the reason you feel you child needs a 504 is a medical condition that your doctor will not put into writing, then your problem is with your doctor, not with the school.

Is your son making making mostly As and Bs? What's his GPA? How is lack of accommodation effecting him?

[zebra15]

This, if you dont have a correct DX you cant get a correct 504.  How do you want the school to accomodate something that doesn't exist on paper?
 

Originally Posted by Linda on the move 

If the reason you feel you child needs a 504 is a medical condition that your doctor will not put into writing, then your problem is with your doctor, not with the school.

Is your son making making mostly As and Bs? What's his GPA? How is lack of accommodation effecting him?

[FAmom]

Your child's records state "Idiopathic Hypersomnia" right?  So, your child has a diagnosis.  I could be wrong, but, most principals and teachers do not also have medical degrees at the high school level.  The accommodations necessary for that medical condition, to maintain an accessibility are stated by your child's doctor, in a letter from him.  That should be sufficient I would think.  

Just off the top of my head, to me, when it comes to qualification, I would think that your child would qualify because it is at the very least a "Hidden" Disability, episodic in nature, that without the proper accommodations could affect his learning.  It isn't necessarily that he is failing, and must have the accommodations to get him back up to speed necessarily, right?  He needs these accommodations to maintain accessibility and a level playing field.  Without what the doctor has deemed medically necessary for him, his ability to continue to learn will diminish, and that will be the fault of the school for denying the accommodations necessary to maintain the accessibility.

And, just as an aside, not necessarily as a recommendation, in our own experience, we've received truancy letters as a result of our withholding attendance because our school has created unsafe situations related to our kids' medical needs.  We looked at it as an opportunity to kind of say "bring it on".... because when we responded to it, it was another portion of the district, at a level, that will get to hear what the school level personnel are doing.  And, usually, when you go district level, principal's and teachers change their tune.

[Emmeline II]

Originally Posted by FAmom 

Your child's records state "Idiopathic Hypersomnia" right?  So, your child has a diagnosis. 

I agree. There is a diagnosis and the doctor has detailed the necessary accommodations.

[blessedwithboys]

I'm going to write more later when the kiddos are in bed, but really quick I want to add that this a charter school.  The school board has basically told me that they can't/won't make the school give him a plan.

Also, I contacted a not-for-profit advocacy group for help.  The main lady just had a stroke and they basically shelved my request.  :( for her and for my son.

[stik]

I hear a lot about charter schools falling down on the job in re. providing services and accommodations to kids with disabilities.  It makes me suspicious.  The whole point of charter schools was supposed to be that they would bring the efficiency of energy of private enterprise to the excessively inefficient public school system.  They certainly have mastered the marketing component, but the more I hear, the crankier they make me.  I think a number of charter schools "achieve" "gains" over public schools by treating certain populations of students really badly.  Those students go away, the student population that remains behind then consists entirely of kids who are relatively easy to teach, and the charter uses the results of treating certain students badly to further emphasize its superiority.  

I don't know how to fix this.

But in short, I think your son's school is refusing to provide him with accommodations for his medically diagnosed disability and is punishing him for a symptom of his illness in order to carry out their strategic plan of reducing the numbers of students with 504s and IEPs in their school population.  I think they will provide services if they think they must do so to avoid being sued.  I would guess that they will do their best to provide the minimum possible level of support - just barely high enough to make you wonder whether or not it's worth hiring a lawyer to take them to court over it.  

I think homebound instruction is a great idea for next year.  

[buttercup]

Originally Posted by blessedwithboys 

I'm going to write more later when the kiddos are in bed, but really quick I want to add that this a charter school.  The school board has basically told me that they can't/won't make the school give him a plan.

Also, I contacted a not-for-profit advocacy group for help.  The main lady just had a stroke and they basically shelved my request.  :( for her and for my son.

This Charter School is

Here is a link to locating a parent training information center (PTIs) in your area - http://www.parentcenternetwork.org/parentcenterlisting.html and also

http://www.yellowpagesforkids.com/help/ptis.htm 

Parent Training & Information Center (PTI): Parent centers serve families of children and young adults from birth to age 22 with all disabilities: physical, cognitive, emotional, and learning. They help families obtain appropriate education and services for their children with disabilities; work to improve education results for all children; train and inform parents and professionals on a variety of topics; resolve problems between families and schools or other agencies; and connect children with disabilities to community resources that address their needs.

Community Parent Resource Center (CPRC): These centers provide information about families rights in the special education process and ways parents can help the school understand their children. The project connects families and professionals with resources in the community and is a source for best practice in special and general education.
 

http://www.wrightslaw.com/info/sec504.index.htm

(Questions and Answers)

My School Doesn't Do 504s. Will a Child Study Plan Work? Section 504 of the Rehabilitation Act is a federal civil rights law that prohibits discrimination against individuals with disabilities. Compliance is not optional.

More info about 504 plans and who is obligated to provide Free Appropriate Education (when receiving federal funds).

http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html

[chiefmir]

I'm a school psychologist/neuropsychologist in a charter school in PA.  Our school (and every other charter school I've worked with) is a publicly funded school and is bound by the same laws regarding ADA and IDEA as any "regular" public school.  504's can be a little difficult sometimes because the federal laws state  that school districts (and a Charter is usually considered it's own district) can write their own guidlines for criteria.  HOWEVER, IMO your son's situation is a NO BRAINER and the school has set themselves up for a major problem.  Make sure you have your requests/contact all documented and, if possible, in writing/email.  Keep a clear log of what happened when (i.e. diagnosis, communicating dx and needs to the school, request for 504 determination, school refusal, your reply, doctors' input, school refusal, etc.)  You son might need to have academic deficits documented to qualify for a 504 under a different diagnosis- such as ADHD (that is the case in our school, as ADHD is a "qualifying" diagnosis when it impairs a child's ability to learn- but not enough to need an IEP)-- but that is not the case with more clear-cut medical problems.  If a child is blind in one eye, they don't need to be getting a bad grade in reading to have a 504 to list accomodations regarding any technology needs, being seated on a certain side of the room, large print tests, etc.  We have a child in our school with diabetes (she's a straight A student) who has a 504 which states the times of day she has to test her blood sugar with the nurse (she's only 11) and what steps should be taken based on what number (at a certain number, she has to eat and be retested in 15 minutes, at a different number the parents called while she's eating, at a different number 911, etc.)  We have had other students with a 504 for hearing loss, pulmonary hypertension, epilepsy, visual impairment, orthopedic impairment, etc. none of these kids had significant academic problems... but OTHER areas of their functioning were either significantly impacted or could be if their needs were not met (in your son's case, consciousness is impaired with his diagnosis, among other things).

the school is very, very much in the wrong, IMO, and in your position, I'd get a copy of your Procedural Safeguards and information regarding Due Process Hearings (if you don't have it, the school does, and they have to give it to you). I'd skip an advocate if one is not readily available and start calling lawyers who have some experience in the world of educational law.

good luck!

[blessedwithboys]

Wow, thanks to everyone who took the time to reply!  :)

Re: the diagnosis...the daytime sleep study was terminated by the tech just seconds before my son was in deep sleep on the last nap.  He missed the narc dx by literally seconds.  He has excessive daytime sleepiness, sleep paralysis, and possible hypnogogic hallucinations.  If he were to have an episode of cataplexy, they would change the dx immediately.  Otherwise, the IH stands until such time as the ins. will cover another MSLT.

The links were all awesome.  This one seems to support what the school is saying, that he doesn’t qualify for a 504 because he isn’t non-functional. I say he is and his doctor says he is but because he doesn’t have behavior issues and isn’t failing, they won’t give him an official legally-binding 504 plan.

I put in one last call to the volunteer advocate today.  If I don't hear back tomorrow I will just forget about it.  I didi speak with the 504 Compliance Officer at the district who promised to call the school and get back to me within a few days.

Quick question:  As of 8am this morning, the ESE teacher at the school has the revised letter written by our doctor which even more strongly lists what accommodations are needed.  (1st letter said "nap may be neccessary, this one says "nap is mandatory, ds must be behind a closed door so that no one can observe him)  How long does she have to respond?

Oh, and I do everything by email so that nothing slips through the cracks.  You shoulda seen the principal's face when I came in with my timeline!  haha

[FAmom]

I only have a minute..... non-functioning?  No.  Way.

Check out this link:  

http://www2.ed.gov/about/offices/list/ocr/docs/hq5269.html

There are some good examples at the bottom of that page.