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

 

Fear can look like a bus

How do you hand your child over to a stranger?  Even when there is no medical issue, sending your kids to school is a stressful thing to go through.  I always use the bus as an example.  We spent countless hours researching car seats and painstakingly strapped our kids into them.  We spent extra thousands of dollars on a car with a better crash rating and then one day we just ignored all of that and pushed our son onto a 14 ton bus with an elderly man that I never met before and waved goodbye.  Anyway you slice it, that’s not so smart.  Now I’m no paranoid and I love that my children are growing more and more independent with everyday.  In fact I understand and welcome the lessons that they will learn when they are away from us and I know that in all likelihood their bus will never be in an accident.  So I put Cole on that bus... but Cole isn’t in any reasonable risk of experiencing a dire medical emergency, Arden is.

So, Fear #1 - I’m afraid of the bus.

How did I make that fear go away? I didn’t but I did dwell it quite a bit.  First thing I did was not take my first option which was to request in Arden’s 504 plan that we be provided with a smaller, air conditioned bus with a medical aide on it.  I could have and I’d have been well within my right to do so but I don’t want that to be Arden’s experience.  I want her school days to be as normal as possible.  So I contacted the transportation department and explained Arden’s situation and we were able to adjust the bus route so that she is the last one on and the first one off.  Her bus time is as limited as possible and I think that with the nurses help we can keep Arden’s insulin peaks away from her travel time.  Additionally, the bus company found us a more empathetic then normal driver.  A very nice woman who isn’t put off by the diabetes or by the extra responsibility that we’ve unfairly asked her to shoulder.

Sadly, all of the planning in the world can’t avoid a low BG incident forever, so Arden has a cell phone and an emergency kit with food, juice and fast acting glucose.  She knows to eat and drink if she feels strange and the driver has been instructed to let her do so.  We’ve also given the driver information on how to access Arden visually and a plan for what to do in an emergency. 

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

Anonymous

Hi,
I'm sure Arden will do well.  I'm excited to hear she has a pump now.  Just wanted to say hello!!!  She is getting so big.
Best of luck in school Arden.
Miss you guys.
Sakeenah Boyd, NP (former Diabetes Nurse Practitioner)

Monday, September 21, 2009 - 09:12 PM