Prep equals success

The other day Arden’s OmniPod experienced an unexpected error and shut down, which happens and is no big deal, unless...

Unless she is sitting on the school bus waiting to depart the building and isn’t old enough to read the error message on the PDM screen and understand it.  Then it might be a problem, right? 

Nope, not a problem and here is why.

Arden got out her cell phone (which she is allowed to carry because of our comprehensive 504 plan) and called me. She said that she thought that, “the pump had an error and shut off” and that she pushed the button to stop the beeping but wan’t sure what to do next.  I asked her to take her phone to the bus driver while I called the nurse’s office.  The nurse went directly to the bus port while I spoke to the driver.  

Now does the driver freak out? No, and why doesn’t she... because we have had multiple conversations about Arden and she understands the situation.  She is also comforted by the laminated instruction sheet that she carries on how to deal with high and low BGs, in short she is educated and mentally prepared.

The nurse called me from the bus port and we discuss if Arden will be okay without an insulin source for the ride home and we decide that she will. 

Then our driver scraped the bus route and brought Arden directly to our house, she was home in less then ten minutes. No one was upset, confused or shook, all because we prepared.

Now this wasn’t a real emergency, Arden was never in any danger but it did serve as a look at the way the people Arden counts on when she is at school will react if an emergency ever arises... and everyone was fantastic!

This pod error was kinda like a fire drill for us, I’m glad in a strange way that it happened.

504 Plan pt3

Collecting & Understanding the Information you need

The American Diabetes Association has a detailed sample 504 plan on their site.  The JDRF also provides a link to various plans here. 

Download these documents, print them out and read them with a highlighter in your hand.  Highlight everything that you think pertains to your child.  Keep in mind that if your son or daughter is too young some of the testing language may not pertain to them right now but you still want to include it in your 504.  Including items that aren’t relevant this year but will be in a year or so is an easy way to get important concessions into the document now that you’ll need later.  This step should save you some hassle in the future.  

Next cut and paste your document together, I made changes like removing, “student” and replacing it with “Arden”, stuff like that.  I rewrote some languageto read as if I wrote it from scratch to avoid the school feeling as though I was coming at them with a formatted document and to make the plan feel more personal and less “legal”.  Some sections we (Kelly and I) wrote completely over to tailor to Arden. 

Next, put yourself in the school’s shoes, more specifically try to think like their attorney.  If anything feels extraneous to your child, take it out but don’t cut something important just to make it shorter...  Anything over a page or two is going to throw the liaison into a tizzy anyway because most parents use the schools too short and too vague form that they provide.  So pare it down as much as possible so that it doesn’t feel too overwhelming to them.  Lastly, cut but don’t cut too much, you may need to have something to use as a concession when the bartering begins (and it will).  

Okay that’s enough for now, except to say that you can’t begin this process early enough. If it is your goal to put a comprehensive 504 in place for your child, one that will keep them as safe as possible, that affords them the best chance to learn, it’s going to take time and a bit of back and forth.  I found starting over the summer break to be ideal, it’s slow going in the beginning but worth the effort.

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The following are archived comments from this post. You can post new comments below.

Anonymous

We began with the ADA's sample 504, using it as a guide.  Unfortunately our school insists on using the ADA template, in its entirety.  We've ended up with a 9 page 504 that is constantly being violated simply because it's so long no one knows what's in it.

Saturday, April 17, 2010 - 10:05 AM

504 Plan pt2

Part 2: Find your zen place

There are a few good examples of 504 plans online, I’ll link to them later (I’ll also make Arden’s available).  But let’s not jump too far ahead.

The first thing to understand is that you will sound like a loon (to the school) when you begin to describe how you care for your child’s type I.  It’s unavoidable, everyone except those who live with type I are likely to think that you’re an overbearing, overzealous loon.  Of course you know that you’re not and I know you aren’t, but nothing short of living with type I can convey it’s complexity... can it?

Since you can’t ask the school to come live with you for a weekend, how do you get them up to speed?  The answer is patiently and methodically.  Your patience will be rewarded  as the uneducated staffers begin to catch on. Don’t forget that these folks have the added burden of wanting and needing to appear in control and you are flooding them with a lot of unfamiliar, technical and jargon laden information.  You may find a nurse with a ton of experience which is great!  However, that could also lead to them wanting to do things their way for comfort’s sake.  If you have a different care plan in mind you are going to have to communicate it, perhaps multiple times.  

You have to resist the urge to acquiesce when faced with pressure.  They know what they know, you know how to care for your child.  Everyone is different and the schools tend to think of all type I children as the same.  There is a definite coalescing period at the onset of this process. If you loose sight of the fact that this is an adjustment for everyone, you can and will fall quickly into a righteous anger.  That anger may feel good but it won’t get you to the desired ending, which is a safe, healthy learning environment for your son or daughter. It will just get you to paying for a child advocacy attorney and years of uncomfortable daily interactions.  

I did well keeping this in mind... Yes the 504 act provides for my child but that doesn’t mean that the school isn’t going to react in the way that people often do when presented with change, with resistance.  I always tried to put myself in the “schools” shoes before I acted.  Remember, every time you make a request, someone has to address it and your 504 is full of requests.  It isn’t fun being asked to do more when you already feel like you do so much and the additions that you are proposing, are at their core, more things for someone to do.  These request aren’t just more work, they are scary.  Face it, it’s scary to be left in charge of our children.  The reactions you are likely to encounter initially are emotional, understandable and not at all about you or your child... you must resist the urge to respond to them in kind or things will degrade fast.  Keeping this balance without giving up your position is the crux of the entire exchange.  

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The following are archived comments from this post. You can post new comments below.

Paul

I like that you used the word acquiesce in your blog.

Sunday, February 21, 2010 - 09:01 PM

504 Plan pt1

I believe enough time has past since we put Arden’s 504 plan in place that I can speak about the process here with an even temper.  I’ll do my best to break the story up into digestible and topical bits. 

Please keep in mind that Arden’s school is currently doing a wonderful job of caring for her.  If at times during this blog within a blog (within a blog) it seems as if I think otherwise, I do not.  That said, I will write honestly about my experiences so that the reader can learn what to expect when setting up a 504 plan.  Our story ends well... not just well honestly, nearly perfectly.  We have administrators that are willing to learn about type I, school nurses that are empathetic and caring and a wonderful health aide.  

Even with good people like this to work with the road to bliss isn’t smooth.

Section 504 of the Rehabilitation Act of 1973

U.S. Department of Health and Human Services.Office for Civil Rights.Washington, D.C. 20201.(202) 619-0403

YOUR RIGHTS UNDER SECTION 504 OF THE REHABILITATION ACT

What Is Section 504?

Section 504 of the Rehabilitation Act of 1973 is a national law that protects qualified individuals from discrimination based on their disability. The nondiscrimination requirements of the law apply to employers and organizations that receive financial assistance from any Federal department or agency, including the U.S. Department of Health and Human Services (DHHS). These organizations and employers include many hospitals, nursing homes, mental health centers and human service programs.

Section 504 forbids organizations and employers from excluding or denying individuals with disabilities an equal opportunity to receive program benefits and services. It defines the rights of individuals with disabilities to participate in, and have access to, program benefits and services.

Who Is Protected from Discrimination?

Section 504 protects qualified individuals with disabilities. Under this law, individuals with disabilities are defined as persons with a physical or mental impairment which substantially limits one or more major life activities. People who have a history of, or who are regarded as having a physical or mental impairment that substantially limits one or more major life activities, are also covered. Major life activities include caring for one's self, walking, seeing, hearing, speaking, breathing, working, performing manual tasks, and learning. Some examples of impairments which may substantially limit major life activities, even with the help of medication or aids/devices, are: AIDS, alcoholism, blindness or visual impairment, cancer, deafness or hearing impairment, diabetes, drug addiction, heart disease, and mental illness.

In addition to meeting the above definition, for purposes of receiving services, education or training, qualified individuals with disabilities are persons who meet normal and essential eligibility requirements.

For purposes of employment, qualified individuals with disabilities are persons who, with reasonable accommodation, can perform the essential functions of the job for which they have applied or have been hired to perform. (Complaints alleging employment discrimination on the basis of disability against a single individual will be referred to the U. S. Equal Employment Opportunity Commission for processing.) Reasonable accommodation means an employer is required to take reasonable steps to accommodate your disability unless it would cause the employer undue hardship.

Prohibited Discriminatory Acts in Health Care and Human Services Settings Section 504 prohibitions against discrimination apply to service availability, accessibility, delivery, employment, and the administrative activities and responsibilities of organizations receiving Federal financial assistance. A recipient of Federal financial assistance may not, on the basis of disability:

Deny qualified individuals the opportunity to participate in or benefit from federally funded programs, services, or other benefits. Deny access to programs, services, benefits or opportunities to participate as a result of physical barriers.

Deny employment opportunities, including hiring, promotion, training, and fringe benefits, for which

they are otherwise entitled or qualified....

These and other prohibitions against discrimination based on disability can be found in the DHHS Section 504 regulation at 45 CFR Part 84.

For information on how to file a complaint of discrimination, or to obtain information of a civil rights nature, please contact us. OCR employees will make every effort to provide prompt service. Hotlines: 1-800-368-1019 (Voice)

E-Mail: ocrmail@hhs.govWebsite: http://www.hhs.gov/ocr

Your Rights Under Section 504 of the Rehabilitation Act (H-8/June 2000 – revised June 2006 - English)

From - http://www.hhs.gov/ocr/civilrights/resources/factsheets/504.pdf