VENT!! Trying to get a 504....talk to me about your experiences.

[KCMichigan]

Mostly a vent, but PLEASE any advice is welcome.=]

Went to enroll my kiddos and meet with the 504 consultant and Principal. One DD is totally incontinent (wears pull ups) but  has no other special needs.

 I request a 504. The consultant tries to steamroll me!!! UGH! She says we can accommodate with a simple health plan...when I explain she qualifies for a 504, she says well that is not how we do them here. and Quote" I have had a lot of 504 training." WHAT?!?!? "Let wait and see....." " She really doesnt have educational needs...." "It would be a lot of paperwork and more meetings...." "We need to get to know her first...."

Lets just say we have a 504 meeting next week. I burned some bridges by stating that a 504 is for " any disability that impacts a life function."....using the bathroom is about as basic a life function as you get! I got her mad by stating that I was a former Spec.Ed teacher. and "DD qualifies for accommodations regardless of her academic skills."

It is clear that my DD qualifies so I dont care how much paperwork, meetings, how you usually do things, etc. She needs accommodations (obviously) and they will be stated in a 504 DARN IT!

It makes me mad not only because it is unprofessional on the consultant's part, but when I think about how she tried to steamroll other parents that may be facing a similar situation but dont know the law that really really gets me. Tossing her 'training' at me and 'that is not how we do it." It is a FEDERAL LAW lady.

Ahhhh now I feel better. Now I have to make sure I get my ducks in a row for the meeting next week. 

What accommodations have you been able to add?

We are hoping to have bathroom assistance (obviously), but in order to attend before/after school care she would need a parapro. Also I want to add access to social worker and no limit on absences (she will miss a lot if she gets sick- way past the 10 days) so I dont get evil truancy notes. Is that realistic?

I know it states equal access to extra curricular activies on the 504 law-- but is that just school sponsored or would include Girl Scouts that is held at the school but a seperate program?

[melissa17s]

I do not think that your 504 consultant got enough training- I thought accommodations in filling out forms would apply to the students and not the consultants unless she had a reasonable need or disability.   Way to advocate for your dd.  Sorry I am no help on the real issues of your dd's 504.

[NiteNicole]

We registered last spring.  At that time, we talked to a few people about some basic things we knew our daughter would need (she uses a walker).  We met again with the teacher to get a few more things ironed out.  It was all very informal because K evals weren't till a week before school started and our SAT meeting was just yesterday - she had been in school for just one one week.

Because it has only been one week, they couldn't really see how her issue would impact her academically.  She's doing fine so far.  They're happy to make accommodations for the things we were concerned about, the teacher brought up some things we had not thought of, and we have plans for another meeting in nine weeks.

She could really use OT and PT but because her issue (I say "her issue" because it's a vaguely diagnosed movement disorder at this point) does not impact her academically, they can't provide services yet.  The team told us and the teacher exactly what kinds of things would qualify and even tried to approach it from several different angels but we couldn't quite get a fit. 

All in all, it's been a good experience.  These people are trying, my daughter is happy, and I don't want to burn any bridges (catch more flies with honey and all that but should the honey stop working, I will be happy to change my approach) just yet. 

ETA:  I hope you are able to get the services your daughter needs.  The whole process is very confusing and the people in charge don't even seem to know exactly what's up.  From what I'm told, here at least, every thing changes from year to year so they are constantly trying to figure out what things trigger which services.  For instance, my kid has a lisp but of course she does, she's lost her front teeth.  THIS qualifies for speech therapy which she does not need AT ALL, but not being able to walk without a walker seems to get a pass for PT.  A sever tremor in her hands does not trigger OT.  It's a mad, mad world.

[OTMomma]

OP- So sorry you are having to fight for the 504! Unless the Girlscouts takes place during school hours, it probably won't make the 504, but you may be able to talk to the troop leader and work things out with her fir your dd to attend anyway.

NiteNichole- the schools seem to work at providing the least therapy possible. I worked in schools as an OT for a while, and I hated that there were kids who needed services that I could not see, and the ones I did see, I was supposed to only work on skills listed on their IEP, not necessarily what I thought they needed most! I recommend getting your child private OT and PT. A therapist that works with her, may even be able to help you find a way to get therapy at school too through a 504. It sounds like they tried to find a way to create an IEP for her to get services through and couldn't make it work, but may not realize they should be able to do it with a 504. Personally when I worked in the school, we got a lot more training on how to do an IEP than a 504, so people didn't always understand the differences and how the 504 had different requirements.

[Emmeline II]

I'm not sure I have info that you don't already know but I'll post some links anyway.

My son has a 504 and the meeting was about an hour, the paperwork (that I received) was 3-4 pages, and was fill-in the blank with space to detail the accomodations--easy peasy.

Are you familiar with the Wright's Law website? They have a lot of free information and they also have it in book/Kindle/epub form. One of their fairly inexpensive books is " Wrightslaw: From Emotions to Advocacy" which addresses the issue you are having now.

I guess you already played this card by revealing that you were a Special Ed teacher, but you could get a copy of "Wrightslaw: Special Education Law, 2nd Edition" (a thick book) and casually leave it on the table at your meeting. Wrightlaw also has their seminars on CD; you can get the whole seminar, or individual sections.

The advocacy advice I have read is essentially to be "sweet," act as if you assume good intentions, and portray yourself as trying to help them make it easy to help your child -- "Oh, I think you've misunderstood, the..."

What's In Store at Wrightslaw

This could be helpful for you; this "e-course" is about advocacy and documentation of your interactions with the school.

Summer School Short Course Writing Story-Telling Letters to Persuade

Under IDEA/IEP, if your child has a disability that adversely affects educational performance, your child is entitled to an education that is designed to meet the child's unique needs and from which your child receives educational benefit.

A 504 is helping your child get the same education that everyone else is getting--more for a student that needs accommodations to help them learn (like sitting next to the teacher) or for behavior, and that they are not punished for things that they cannot control due to the ADHD (like needing to work standing up or not sit inside a group).

IHPs, 504 Plans, and IEPs - Oley Foundation

Can you summarize: IHP vs. 504 plans?

504 vs. an Individual Health Plan [Archive] - Children with ...

 

Scroll down to 504 Plans:

Sending Food Allergic Children to School

Key Differences Between Section 504, the ADA, and the IDEA.

(http://www.wrightslaw.com/info/sec504.summ.rights.htm)

Key Differences Between Section 504 and IDEA

(http://www.wrightslaw.com/howey/504.idea.htm)

Advocacy
"To be an effective advocate for a child with a disability, you need to know your rights and responsibilities under the IDEA and Section 504. You also need to learn advocacy skills."

Advocacy Rule #1: Write Things Down When They Happen. "You can’t wait until the last minute to prepare documentation. Documenting events and conversations later is never as effective or accurate as writing things down, in detail, at the time they occur. Here are some tips for parents, teachers, and paraprofessionals."

My School Doesn't Do 504s. Will a Child Study Plan Work?

[KCMichigan]

Thanks Emmeline!

I have read Wrightslaw.com a lot.

I was not rude at all (just fuming on the inside!), bur fairly firm that a 504 was the only option since I know she qualifies. I want all the extra protection/documentation/accountability available if we need it and the school is not providing adequate support for her.

I think they hoped I would go along with a healthcare plan......but sorry, I think of that for more minor needs (mild/moderate allergies, asthma, etc). We have a healthcare plan for both my DDs mild asthma.  It does not interfere with daily life, but it is a medical concern that needs attention.

Though, I did have to read up in 504 to make sure nothing had changed recently. 504 s are handled by Gen Ed., not Spec.Ed. though they are a Spec.Ed law.

Just the pushiness of the 504 coordinator was very off-putting. I was surprised-- having been a Spec.Ed teacher I recall fighting FOR services for the kiddos on my caseload not trying to avoid offering them!

I did talk to a friend who happens to be a school psychologist in another district. He said a lot of areas are trying to move to health care plans in order to avoid the accountability required of a 504. Sad since it is the kiddos that lose out of the plan is not followed.

[NiteNicole]

I recommend getting your child private OT and PT

I know you don't know about us and our situation and you're trying to be helpful but every time someone tells me we should just get her some PT/OT, I want to scream.  That stuff is not free.  Our insurance (our very expensive, private insurance for which we pay a small fortune) does not cover it.  We are not low income so we don't qualify for any programs.  I'm sure PT and OT are wonderful things but without a spare $800+ a week, we'll never know.  There is literally no way we can come up with that kind of money. 

This is your healthcare system, America, and it effing sucks.

[blessedwithboys]

OP, I wish I could do what you did!  Our school district refuses to accommodate my son's health issue on all the basis of his fairly decent grades.  I just decided this past week that I give up and the very next time he has a bad day, I am pulling him out.

NiteNicole, I hope I don't offend you with more advice that may not apply to you, but in my state the Elks club provides free OT to any child, regardless of income.  They came to my home and brought all manor of equipment, some of which they loaned me for a few months.  Perhaps something similar exists where you live?

[Lollybrat]

Originally Posted by NiteNicole 

She could really use OT and PT but because her issue (I say "her issue" because it's a vaguely diagnosed movement disorder at this point) does not impact her academically, they can't provide services yet.  The team told us and the teacher exactly what kinds of things would qualify and even tried to approach it from several different angels but we couldn't quite get a fit. 

Just a thought - does she qualify for APE (Adaptive Phys Ed)?  Under the law, Speech, OT, and PT are "related services"  which means a student only has to get these if there is an academic impact. However, APE is a "direct service", so there is no need to show that there is an educational benefit.

APE can include a lot of the same goals that PT does. My son get speech and OT, but does not qualify for PT. However, his gross motor delays qualify him for APE. The APE teacher works on goals to improve his coordination, balance, muscle tone, and motor planning.

[KCMichigan]

Originally Posted by NiteNicole 

I know you don't know about us and our situation and you're trying to be helpful but every time someone tells me we should just get her some PT/OT, I want to scream.  That stuff is not free.  Our insurance (our very expensive, private insurance for which we pay a small fortune) does not cover it.  We are not low income so we don't qualify for any programs.  I'm sure PT and OT are wonderful things but without a spare $800+ a week, we'll never know.  There is literally no way we can come up with that kind of money. 

I dont know if I mentioned it, but have you looked into Shriners, Easter Seals, etc. They all offer free services. Our area also has therapudic horseback riding on a sliding scale (0-20$ a session).

Lastly, our children's rehabilitiation center did a sliding scale. They were very generous in making sure that kiddos that needed services got them.

Also, have you looked into a 504? With medical documentation that your DD has a physical disability (names or not) you should and could get accommodations. I know they are giving her some now....but actual paperwork will make sure she is getting what she needs. I would also second the idea of APE and/or a PT/OT eval through the schools. 

YOU can request an eval. regardless if it has academic impact that is obvious now.

My other DD (not in original post) got PT & OT through the schools and she was fully mobile-- just struggled with fatigue and poor coordination.

Originally Posted by blessedwithboys 

OP, I wish I could do what you did!  Our school district refuses to accommodate my son's health issue on all the basis of his fairly decent grades.  I just decided this past week that I give up and the very next time he has a bad day, I am pulling him out.

NiteNicole, I hope I don't offend you with more advice that may not apply to you, but in my state the Elks club provides free OT to any child, regardless of income.  They came to my home and brought all manor of equipment, some of which they loaned me for a few months.  Perhaps something similar exists where you live?

blessed w/ boys. Does your DS health condition impair a life function?? If so look at Emmeline's 504 guidelines. You would also need a Dr statement that would outline specifics.
 

If the school does not work with us, I will pull out DD too. I *can* teach her at home, but would really like to try public school.

Originally Posted by Lollybrat 

Just a thought - does she qualify for APE (Adaptive Phys Ed)?  Under the law, Speech, OT, and PT are "related services"  which means a student only has to get these if there is an academic impact. However, APE is a "direct service", so there is no need to show that there is an educational benefit.

NiteNicole-- I would pursue this if you can. With your DD using a walker, I cant imagine she would not qualify for APE.
 

[Alenushka]

go for IEP, 504 is pretty toothless

[Emmeline II]

Originally Posted by KCMichigan 

 

I was not rude at all (just fuming on the inside!), bur fairly firm that a 504 was the only option since I know she qualifies. I want all the extra protection/documentation/accountability available if we need it and the school is not providing adequate support for her.

I wasn't trying to say you were being rude just that I would aim for an "I understand your burden, but this is the way is going to have to be" attitude.

I think they hoped I would go along with a healthcare plan......but sorry, I think of that for more minor needs (mild/moderate allergies, asthma, etc). We have a healthcare plan for both my DDs mild asthma.  It does not interfere with daily life, but it is a medical concern that needs attention.

After reading up on IHPs I have to agree; she either has an agenda (fewer 504s), is ignorant of the law, or lazy (not wanting the paperwork/meetings). Also, it's not either/or for IHPs/504s; in this situation they should put the IHP within the 504.

Also I want to add access to social worker and no limit on absences (she will miss a lot if she gets sick- way past the 10 days) so I dont get evil truancy notes. Is that realistic?

I don't think that the issue of absences/truancy is addressed in a 504 directly, but documentation from her doctor detailing her condition and related health concerns should be in the IHP part of the 504. It may not save you from truancy letters (which can be triggered automatically) but you can refer them to the 504 plan. She may actually qualify as OHI (as part of the 504) which may be where a social worker would come in, and I think OHI classification would also head off any "guff" they may have tried to give you on any truancy issues.

 

What does OHI Mean?

When Schools Punish Sick Children Who Miss School: A ... - Wrightslaw

My Child Has Health Problems, the School Reports Him Truant by Suzanne Whitney

[NiteNicole]

Thanks for all the advice, OP I am sorry for derailing your thread, but we have tried things from so many angles.  We happen to be "middle class" in an area where everyone is quite wealthy and the notion of services on a sliding scale seems foreign to everyone here.  If I could tell you the number of times I've tried to explain "insurance doesn't cover it" and "we can't afford that" to strangers on the playground...you just wouldn't believe.  It's like anything outside of the Happy  Bubble of Wealth And  Privilege just does not compute and because we aren't low income, it doesn't usually apply to us anyway (the short story is that the past few years have been one bad call after another for us - things like moving across country to a new place days before a natural disaster, my husband finding out his job was folding right after we closed on a house, finding a new job at 1/3 his old salary and THEN finding out that they couldn't cover us on their insurance, craptastic private insurance, then my daughter getting sick - it has been one thing after another.  On paper, I see how much he makes and I think, how can we not afford PT?  How is that possible?  But we have medical bills, a house we couldn't afford that FINALLY sold, etc).  I don't mean to be all OH POOR US, PITY ME but we just fall through ALL the cracks.

I know it seems like people put up suggestions and I just knock 'em down, it's just that I feel like we've been down just about every road and we hit dead ends.  We are seeing a new neuro in about two weeks so maybe she will have something new to add.

Her doctor wrote a note and recommended APE, but right now the PE coach says they're not really doing things she can't do and she seems to enjoy being with her class and doing what they do.  I hate to take her out of something if she seems to be doing fine and I'm not sure that APE would be all that different from what she's already doing.

We have another eval with the school scheduled at the end of the first nine weeks, but it can be moved up if the teacher thinks she needs it sooner.

[OTMomma]

Nite Nichole- I am so sorry you haven't been able to get therapy for your dd. In your case I would push hard at the next meeting at school for an OT and PT evaluation, because an evaluation does not guarantee services, it is actually up to the therapist to decide if it's needed. Reasons to ask for OT- dd has poor hand writing, dd fatigues at writing and has trouble completing her assignment in class because she writes slower than average, or has to stop to rest (if she brings home a lot of class work to do as homework this is an issue). Or if she is having any problem at all functioning independently at school. As for PT, if she fatigues walking between classes, ever falls down at school or cannot actually keep up in gym, you can ask for PT based on those grounds. I don't know if this will help, but I hope it does.

[NiteNicole]

Thanks for the info.  She did have an eval for PT and so far, she just doesn't quite meet the criteria.  As for OT, the teacher says they're not actually doing enough writing yet to be able to tell so that's why she requested another meeting at nine weeks.

So far their PE has been really creative - it's not running laps like and choosing teams to find various ways to torture each other like it was when I was a kid.  They seem to work her in really easily but everyone tells me if they reach a point where adaptive PE is needed, then we can reevaluate.

I don't get the feeling that any PERSON is trying to find reasons to deny services as everyone has been more than helpful, I get the feeling that THEY have to convince the people above them beyond ANY doubt.  They said several times if we have a specific need or it comes to our attention that she meets the criteria before the meeting, we should let them know and we'll reevaluate.  I'm disappointed but I also feel like the people I am dealing with are on our side.

[blessedwithboys]

Originally Posted by KCMichigan 

blessed w/ boys. Does your DS health condition impair a life function?? If so look at Emmeline's 504 guidelines. You would also need a Dr statement that would outline specifics.
 

Yes, it does, and we have (several) statements from the doctor detailing all the ways it affects him.  I've been to half a dozen meetings at two different schools and they just keep saying that they don't see what I see and he is making passing grades so they see no need to accommodate him. 

[Emmeline II]

Originally Posted by blessedwithboys 

OP, I wish I could do what you did!  Our school district refuses to accommodate my son's health issue on all the basis of his fairly decent grades.  I just decided this past week that I give up and the very next time he has a bad day, I am pulling him out.

Yes, it does, and we have (several) statements from the doctor detailing all the ways it affects him.  I've been to half a dozen meetings at two different schools and they just keep saying that they don't see what I see and he is making passing grades so they see no need to accommodate him. 

 

Grades have nothing to do with a 504 and an IEP can be had with good grades as well if they are below a child's achievement ability. There are the options of a due process hearing and filing an OCR complaint. The OCR complaint is pretty simple, you make a complaint and they decide whether or not to investigate; the due process hearing is more involved.

Eligibility for Special Education Services: Articles ... - Wrightslaw

Is a Child with Passing Grades Eligible for Special Ed under IDEA?

Due Process - Wrightslaw

OCR Complaint Process

 

►

[blessedwithboys]

Thanks, but I spent a few months last school year dealing with OCR.  They are totally useless, IMO.  I guess all they do is ensure that the school followed The Process.  They can't make a school give a child a 504 plan.  And anyway, the charter school they were in last year closed over the summer.  Now ds is in the regular public high school.  I'm not happy with it for many reasons (When I asked for a meeting to explain that ds has narcolepsy and the dr wants him on full-time homebound, the school refused to cooperate and then the guidance counselor told me to make sure to use ds's student # anytime I called him, bc there were just too many kids at the school for him to remember anyone by name.  Typical, I'm sure.) but ds really wanted to try it out so I made a deal with him that he could go unless and until he had a physical break-down, which has already happened, so he'll be enrolled in either virtual school or The American School in the next few weeks.

(Sorry for the hi-jack!)

[Emmeline II]

Originally Posted by blessedwithboys (When I asked for a meeting to explain that ds has narcolepsy and the dr wants him on full-time homebound, the school refused to cooperate and then the guidance counselor told me to make sure to use ds's student # anytime I called him, bc there were just too many kids at the school for him to remember anyone by name.  Typical, I'm sure.) but ds really wanted to try it out so I made a deal with him that he could go unless and until he had a physical break-down, which has already happened, so he'll be enrolled in either virtual school or The American School in the next few weeks.

Ah, now I remember your situation.

[Linda on the move]

Originally Posted by KCMichigan 

"It would be a lot of paperwork and more meetings...." "We need to get to know her first...."

...It makes me mad not only because it is unprofessional on the consultant's part, but when I think about how she tried to steamroll other parents that may be facing a similar situation but dont know the law that really really gets me.

...

 Also I want to add access to social worker and no limit on absences (she will miss a lot if she gets sick- way past the 10 days) so I dont get evil truancy notes. Is that realistic?

I know it states equal access to extra curricular activies on the 504 law-- but is that just school sponsored or would include Girl Scouts that is held at the school but a seperate program?

I'm so sorry you are going through this. The first part is BS. 504s can be as easy as the school wants them to be. One of the reasons my DD had a 504 rather than an IEP was because they are easier to change and require fewer people sign off on them.

I, also, have gone through periods of anger and sadness about kids with sn whose parents don't know how to work the system, or whose lives are so chaotic that they can't.

My DD's 504 included no limit on absences. However, her issues are directly related to missing a lot of school. At our school, you would need to back up that your DD is more likely to miss school than a typical child, that her absences are related to her sn.

At our school, ALL children had easy access to the social worker, so it wouldn't be an accommodation. However, DD had permission to go to the SW office at anytime without telling her teachers, and to go to the school secretary if the SW was busy.

Girl Scouts is a different deal because it isn't a school activity, BUT girl scouts is an inclusive organization that prides itself on including differently abled girls. If you have any problems with your local troop, contact your GS council. We were in GS for years, and the only hang up I see for you there is that this is a volunteer organization, and frequently there aren't enough volunteers. You aren't dealing with a professional, but with another mom who is doing her best. I suspect that your willingness to help with field trips and such could go a long way toward building goodwill, even if the main meetings are when you cannot attend with your DDs. 

good luck!