Guarding Your Information — 5 Minutes for Special Needs

Guarding Your Information

by Attila The Mom



                               
 
It’s that time of year again.  The beginning of the school year—when we have to fill out endless forms for the kids, and it seems like it will NEVER end.  And as the parent of two kids who have special needs, it used to seem like I had double the forms to complete.
 
This has brought to mind something that as a local disability advocate, I warn other parents about all the time.
 
There are some things that are none of the school’s business. 
 
I’ve met quite a few parents over the years who are so overwhelmed by the care, treatment and education of their kids that sometimes the lines get blurred as to who is “entitled” to what information, so they’ll fill out almost anything, even if it makes them uncomfortable.
 
For example, one yearpw I received packets in the mail along with the boys’ registration forms.  They were both in elementary school at the time, and we were new to the district.  The top of the packet read “Family History”.
 
The first section was a place to put the usual stuff.  Kids’ names, address, date of birth, etc.
 
The second section said “Mother’s History.”  It asked questions such as “number of pregnancies” and “number of live births”.  And my general health or illnesses during the pregnancy of each child.
 
WTH?
 
I thumbed through the packet and looked at other questions.  They ranged from milestone information to family health history—high blood pressure, diabetes, mental illnesses…
 
I took a sharpie marker and put a big N/A (not applicable) through each section.  Then I signed the packets and sent them back in (which has really ticked me off in hindsight—I should have made copies of them first).
 
A few days later, I received a call from one of the administrative staff at the school.  She was calling (somewhat superciliously) to tell me that they were sending me duplicate packets that needed to be filled out.  If I needed “help” with them, that could be arranged.
 
“No.” I said.
 
“Excuse me?”  She seemed utterly astounded that I would respond in the negative.
 
“No.  I’m not filling them out.”
 
“We need to have them before your children start school,” she insisted.  “So we can better serve them.”
 
“If I don’t fill them out and send my guys to school anyway, are you going to refuse them entry and send them right back home?”
 
She didn’t know.
 
“Is every family required to fill one of these out, or only those who have special-needs children?”
 
“Only the children receiving special-needs services.”
 
“Why?”
 
She didn’t know.
 
“Who’s going to have access to this information?”
 
She didn’t know that either.
 
I feel kind of bad about what happened next, because I know she was just a secretary acting on orders from up high.  For the next few years, every time we saw her at the grocery, she’d scurry away with her cart to the other side of the store as fast as her stumpy little legs could carry her rather than cross my path.
 
But I really hate being patronized, and that “we can arrange ‘help’ for filling out the packet” thing stung.  I was mad.
 
So I ate that broad for lunch.
 
“First of all,” I started out, “the school is in the business of educating my children.  Nothing more.  Nothing less.  Nobody there diagnoses, treats or prescribes for them.  We already have doctors, therapists and psychiatrists who do that, and none of them is YOU.  The information you need to have that is pertinent to your jobs is contained in the evaluations that have been provided by those professionals.
 
Unless you can explain to me how knowing how many miscarriages I’ve had or if I had hemorrhoids while pregnant will better help you teach my child to read, it’s NONE OF YOUR FREAKING BUSINESS!”

Except I didn’t say “freaking”.

And then I hung up.
 
A couple of days later, the school psychologist called me.  “I understand you’re resistant to filling out the paperwork.”
 
Resistant?  An understatement.  LOL
 
I was better prepared this time.  I cheerfully explained my concerns (among them that this is a small town, and that employees from the school don’t have  doctor-patient confidentiality agreements in place with families).  I would agree to consider filling out the packets provided the school send to me in writing the reasons why they needed this information and how it would help them to educate my children, why only special-needs families were required to fill them out, a list of who would have access to our personal information and what their interest/function was, and an acknowledgement that I would sue the pants off of them if our information was used for any other purpose.
 
I never got that letter.  Or another packet to fill out, I might add.  Ever.
 
But I wonder how many other parents filled it out because they thought they “had” to?
 
I guess what I’m trying to say is that as much as we try to get help for our kids in as many ways possible, there is some information that some people really DON’T need to have.  If you’re filling out forms and there is an item or four that make you feel uncomfortable or seems inappropriate, it probably is. 
 
My best advice as an advocate?
 
Leave it blank.
 
What are they gonna do?  Kick your kid out of school?
 
Hope you all have a wonderful weekend!
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1 Janis September 11, 2009 at 8:33 pm

Excellent point! I’ll bet you hadn’t had your coffee yet on the day she called huh? Don’t harass me before I have had my coffee or you will be SORRY!!!

2 Bonnie Sayers September 11, 2009 at 9:13 pm

I dont fill that info out either. I also dont for the nurse triennial info, not relevant to the here and now.

This is why I dont do the school lunch program since it wants income and SSI #s. Even if you dont want in the program they want that, I refused.

3 Krystal September 11, 2009 at 11:06 pm

I find it interesting that you were provided with these forms. I cannot recall one time where I was given forms with those questions for school purposes, only for medical. WOW!! What some schools try to get their hands on – I swear!

4 Renee Garcia September 11, 2009 at 11:27 pm

GREAT post! I can’t imagine my daughter’s school asking these questions! WTH?! I think you handled it perfectly!

5 Linda September 12, 2009 at 1:27 pm

Amen, sister. It’s not mandatory. Many things are not. You just have to be informed and protect your child and yourself. Great post.

6 Kimberly McCune September 14, 2009 at 11:24 am

I think this is very important information. As advocates for our children we need to have all the tips and helps we can get. I love that you shared this!!!

7 Kimberly McCune September 14, 2009 at 11:26 am

Me again I had to correct my spelling in my url..it is monday ya know ;)

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