Changing policy at a district level

[MomTo3]

Hello!  I was wondering if anyone here had campaigned to change school policy at a district level?  I would love to start a dialogue about this with the super and school board but I kind of don't know where to start. The current district policy is basically "evaluate for a 504" and that's about it leaving a TON of gray area on so many things.

Just wondering if anyone has any advice about starting something like this??

TIA

[Macabre]

Well, I've been a trendsetter, but that's not the same thing, lol. But because of my work, the district changed their approach.

When you state your district policy is "evaluate for 504," what are you wanting to change?  Are you referring to having your district actively seek our children with LTFA as known through their IHCP and offer 504s--per the Virginia Beach and Memphis OCR cases?

[MomTo3]

I am looking more at food in schools (parties, PTA functions, birthday parties, food use in classes) as well as epi training overall.  Perhaps I need more focus as those two seem pretty small in the greater scope of things.  I just don't know, I'm all over the place I think.

[CMdeux]

Okay, well...

I have to agree with Mac, here.  "Evaluate for a 504" is a change that I helped to make a reality with Connections Academy-- the virtual school.  That's their policy now at the national level.  We were definitely the first there.  It was at times quite tense, and I'd be lying if I said it was perfect, even now...

but still, that simple phrase is amazing in practice.

It's INFINITELY flexible-- something which blanket policies about individual accommodations are not.


I am also going to ask-- where are you at, exactly, in your journey as an advocate and FA parent?  I'm guessing that you may be relatively new to the school system?  I recognize that "all over the place" feeling, let's just say.     If you're less than about four years into things, seriously consider whether you have the extra energy to spend on this.  I say that with all respect and compassion-- the impulse to do something greater than just for one's self is lovely... but...

do consider the ramifications.  Know that if you push for specific changes, you may face a LOT of backlash-- and not all of it from non-FA people.  Some FA parents will fight you tooth and nail as well. 

A 504 plan is flexible enough to accommodate students with a WIDE variety in management styles, in ages, in sensitivity and severity.   It can be flexed for different school configurations and pedagogical methodology.

So really, a healthy 504 process that includes child-find probably IS the ideal.


There are currently some movements to allow non-designated autoinjectors into public places like schools-- much the way that AED's have become.  That might be an advocacy push with your local district. 

[MomTo3]

I do understand that the blanket "eval for 504" IS great. How many kids HAVE 504 plans in place?  It isn't an automatic "you have an allergy, here's a 504!" kind of thing. Many many people don't even know that FA's quality for a 504 so they don't ask and even when they do, they don't know what kind of accommodations to ask for. I know our 504 doesn't say anything about after school activities. I also know there are kids who don't go to these things BECAUSE food is served. I also know there are a wide range of policies between schools which blur the lines even further.

What about a blanket "no food in lessons"would be problematic for the general population?  Non food birthday treat, what about that is a bad thing when on top of FA there is an epidemic of childhood obesity out there?   This isn't just about my kid either. We manage pretty well but I also feel I have more knowledge than many about FA's and what can be done to accommodate kids and not everyone is as lucky.


And yes, I am newer to the advocacy issue, not FA's though. I know I'm not seeing around all the trees but there has to be a way to safely navigate the forrest.

[CMdeux]

Ask yourself this--

would you be happy if another parent dictated more restrictive terms than your child really needed?  As "standard" management practices, I mean.

Now, stocking epinephrine at schools is probably not in that category of dictating to others. 

Mmmmm... limiting food in curriculum... well, that one is a lovely idea, and don't I wish that there were a way to bring the same people around the big table and push that one forward as a group,--

Stakeholders there include:

a) childhood obesity advocates
b) diabetes advocates
c) nutrition advocates
d) food allergy advocates
e) religious organizations (some faiths have dietary restrictions)

Honestly-- all of those people would like food to be used only as FOOD, not as a "teaching" thing within classrooms, and definitely not as a "celebration" thing for birthdays, rewards, and at random.

But think about who is on the other side of that issue.  They have emotions and numbers on their side.  Unfortunately.


Those people also will scapegoat food allergic children if you manage to get changes implemented.  It may not be worth it.  (I say that from over a decade into this-- the bad will that some things generate weighs heavily on the side of 'not worth what it costs in human capital')

Don't burn bridges that you'll need later.  That's all.  If your child is in K-3 right now and you plan on staying put, do what you can to not become "that mom" to your district or your community.  Seldom does any good come of that.

Educating on the edges is often more successful in the long haul.  If you can team up with teachers who agree with you (in terms of the appalling amount of food thrown at kids) then cultivate those people. 

[CMdeux]

Here is what I see as "risky" with pushing hard on food-out-of-classrooms advocacy:

I fear that the perception will be (among teachers, administrators, and other parents) that "there's no pleasing those nutty food allergy parents!!" because of the already-in-place policy.  There IS risk to the existing policy if you alienate the wrong people-- particularly if the "504 eval" policy is relative recent.  You may even-- surprisingly-- run afoul of diabetes advocacy here if you aren't careful.  Diabetic children are also entitled to full inclusion and LRE-- and they may NEED to have snacks at regular (or as-needed) intervals.  Forcing that OUT of the classrooms outs those kids and denies them LRE and even medical privacy.

I understand from what you've stated that your district may not be doing child-find there very well.  On the one hand, that might be a place where you can gently nudge things in a better direction (at the tails of meetings, etc.), but on the other, parents who have very relaxed management styles and WANT their kids to be 'anonymous' w/r/t food allergy at school may not thank you if they are suddenly forced to explain why they won't be insisting that their child wear a medic-alert bracelet and carry epipens everywhere. 

For a child that avoids GROSS ingestions and has never had a severe reaction even to small known ingestions of an allergen, do they, in fact, need a 504 plan?  Maybe-- and maybe not.  Remember, this is about degree of impairment.

It's not as simple as it first appears.  Don't underestimate how much TEACHERS like having food in classrooms.  Many elementary teachers genuinely believe that food improves engagement and understanding.  They're really difficult to reeducate.

Have you read The Lunch Tray?  Bettina always has wonderful, thoughtful insights into this particular issue.   I really recommend reading her blog. 

[twinturbo]

OP, based on what you've written a good fit for you may be anchoring a FARE support group in your area. In addition you could seek out the ACE (Anaphylaxis Community Expert) designation from AANMA.

Bolstered by trusted names that would form a beacon to attract volunteers of like mind. The National School Board Assocation has a good full-color guide that might be a good tool to have on hand. make sure it's the 2013 edition and that all parties read it carefully. The other recommendation I would give if you are inclined to do so is learn about CFRs. Code of Federal Regulations are printed by the GPO (Government Printing Office), they are the federal regulations themselves. For instance 'Section 504' refers to 34 CFR Part 104 Section 504 with subpart D primary and seconday schools, and subpart E concerning post-secondary education. 34 CFR are the regulations for the US Dept of Ed.

Additionally, Title II and Title III reside in US DOJ in 28 CFR Parts 35 & 36 respectively. They govern publicly owned insitutions and public accommodations.

When considering initiating new rules one would need to also consider how it would be enforced. Laws aleady exist to cover the grey areas with designated enforcement. For example, a PTA or PTO would already be regulated if the public school is rendering 'significant assistance' to the organization per definition.

There are some decisions, opinions, findings from hearings, courts, etc. you could identify, have on hand as a support group leader. I'm not sure if anything I've suggested is helpful or interesting to you but I do believe it would build a substantial toolkit of existing laws and regulations that are currently enforced. It may be a role for a guide to harness the system rather than policymaking.

[Macabre]

But guys--it can be done. It is possible to have a positive impact.

And it may even be possible to do it without a pitchfork happy mob.

This happened in Loudoun County because a parent made progress toward policy change:

 Information about students’ food allergies will be kept in the classroom. Foods containing allergens specific to a child are not to be used for class projects; parties; holidays and celebrations; arts, crafts, and science experiments; cooking; or other purposes. The use of healthy foods should be encouraged. The IHCPs of students in the classroom must be followed. Classroom teachers should be respectful of the privacy of all students.
 All students and their parents, teachers, assistants, and substitutes should be educated about the risk of food allergies.
 Non-food items will be used instead of candy when considering rewards. The IHCP of students in the group must be followed. Inclusion of all students in classroom rewards is essential.
 Only non-food treats will be allowed for birthday celebrations.

(See this thread:  Loudoun County Public Schools, Virginia)

One member here was on that committee. And another person who occasionally visits us.

[twinturbo]

I can't speak for CM but I'm neutral on policy. If one pursues it I merely suggest not duplicating efforts and going in knowing what leverage truly exists for regulation enforcement, and perhaps credibility. I would never discourage advocacy I do it myself in another arena. With regard to food allergies I'm on an individual basis against a district policy because I've had it used as a reason to not write something in as an accommodation or that since it exists it should serve all kids with FA. It doesn't deter me but I get the sense from staff of why? Why do we have to do more?

To be clear I do not in any way wish to deter OP if I gave that impression, but there is a lot already in existence clearly defined by law. If I were coming into a district to change it I would want to know the laws with exceptional accuracy and context because as we know policies can change without notice.

[PurpleCat]

Hello!  I was wondering if anyone here had campaigned to change school policy at a district level?  I would love to start a dialogue about this with the super and school board but I kind of don't know where to start. The current district policy is basically "evaluate for a 504" and that's about it leaving a TON of gray area on so many things.

Just wondering if anyone has any advice about starting something like this??

TIA

Yes.  I am one of the voices.  Our school committee agreed it was time to look at a policy and a group of parents and a school committee member sat down to brainstorm and write.  What a exercise and what an eyeopening process.  We looked at each and every point from a nurses perspective, teacher, administrator, etc....  It took a long time.  It was so worth it.  it was reviewed with school administrators, teachers and nurses.  It was accepted.  It is meant to be a starting block with parents advocating for the specific needs of their child.

We hit every area including things like field trips and after school sports.  That means that every child in our district with allergies gets to start here and accommodation plans don't have to continually rehash the basics.  Just get into the nitty gritty of what their child needs in addition to these accommodations.

That was about 7 years ago.  I still sit on the group that reviews the policy every couple of years to see if it needs to be changed.  That group is the superintendent, head nurse, a building principal, a teacher, and a couple of parents.  Last year we opened the discussion district wide.  The plan for the most part is the same as it started.

Not to toot my own horn....but as a group, we really did a good job.

Yes, it can be done.  It's a commitment.  Our district was open to it.