Advocacy Info


From the NJ/PA Eosinophilic Information website:  http://www.njpaeos.org/advocacy.html

Public Events (Ballgames, amusement parks, etc.):
You may hear that you are not allowed to take your food into the event, under any circumstances.  Obtain a general letter from your Dr, explaining that you or your child(ren) are allergic to multiple foods and cannot eat the food that is provided in the park/event.  Therefore, you must bring your own safe foods from home.  If this isn't sufficient, mention or take a copy of the Americans with Disabilities Act, Title III: Public Accommodations.   Hopefully it will help you get past the problems that some people are facing in these cases.  


Behavioral &/or developmental issues:
  
While the reason/link is not clear, there are a number of children in our eosinophilic community who are being diagnosed with Asperger’s, High Functioning Autism or PDD.  If your child is experiencing ongoing behavioral issues or developmental issues, learning disabilities, social skills difficulties, etc., even if they are mild, you may want to consider an evaluation by a Developmental Pediatrician.  Your child’s pediatrician will be able to help guide you as to who to see, if appropriate.  The wait lists for developmental pediatricians are often VERY long (1-2 yrs), so the earlier they are contacted when you see a potential problem, the better.

School:

It is important to have an IHP (Individual Healthcare Plan) set up at school, as well as either a 504 plan or an IEP (Individual Education Plan).   Some school districts are easier to deal with than others, but if your child has EoE or EGID, he or she is eligible for protections under the law as Other Health Impaired” (OHI).  The degree to which this affects the child at school will determine whether a 504 plan is sufficient or an IEP is needed. 

For example, if your child is in a public school system and needs medication or help with enteral feedings at the nurse’s office, but doesn’t receive any special education services and does NOT miss school frequently enough to need supplementary instruction, homebound, etc., then a 504 plan may be sufficient.  However, if you suspect your child may need special education services (educational help with reading, writing, math, etc, an aide, speech, social skills, occupational therapy, physical therapy, etc), or if he/she is out of school often and may need supplementary instruction or homebound instruction sooner than is usually offered by your school (to keep him/her from falling too far behind), then you should send a written request to your school’s Child Study Team, requesting an “Identification Meeting.”  

At that meeting, a team, consisting of the parents, teacher, special ed teacher, school psychologist, guidance counselor, and others (possibly the principal, occupational therapist, speech therapist, etc), will sit down and discuss the request.  By the end of the meeting, the team should decide on what additional testing is needed to properly evaluate your child’s educational needs and what accommodations and modifications may be necessary in the meantime to provide a Free Appropriate Public Education (FAPE) for your child.  After testing, it will be determined what additional accommodations and modifications will be needed and either a 504 plan or an IEP will be written.  

The IHP (Health Plan) is usually written by the nurse, and can often be incorporated or attached to the IEP.  In some states, the IHP is not enforceable on its own, without being written into the IEP.

It should be noted that an IEP provides more protection under the law than a 504 plan as it provides both the protection of IDEA (Individuals with Disabilities Education Act), which is a special education law, and Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act, a civil rights law that protects individuals with disabilities from discrimination.  A 504 plan provides protections under Section 504, but not IDEA. 

Some issues that you may need to address in an IEP or 504 plan might include (but are not limited to): 

  • Enteral feedings at school according to Dr’s feeding orders;
  • Oral consumption of formula according to Dr’s orders (feeding schedule);
  • Extra snacks at school (if blood sugar issues or early satiety are an issue); 
  • Enteral feedings, formula or food on field trips (and the presence of someone who is trained to handle your child’s feeding needs);
  • Unlimited bathroom visits;
  • Lateness and absences from school if due to motility issues or illness caused by the child’s EoE/EGID (so the child isn’t penalized for these);
  • Reducing the time before homebound or supplemental instruction will begin. Under normal circumstances (without accommodations), homebound instruction begins after 10 days of absence, but can be reduced to as few as 2-3 days if needed.  This can be a VERY important accommodation for those students missing school due to their medical issues, especially so in middle school and high school, but even at the elementary school level.  Homebound /supplemental instruction does not have to be done at home, but can also be in a library, etc, or even after school when the student returns.  (Note: this particular accommodation cannot be written into a 504 plan, so the school must write an IEP.  If this accommodation is appropriate, your child IS ELIGIBLE for an IEP as the health impairment DOES AFFECT his/her education.);
  • Supplemental Instruction – this can be helpful when time is missed from class(es) due to medical issues, even when the child has not actually missed school (i.e. being in the nurse’s office due to nausea, stomach pain, limb pain, migraines, etc.).  If a student misses too much class time, they will fall behind and this can be rectified via supplemental instruction &/or homebound instruction, which can be given after school if necessary.  This is an IEP accommodation.
  • Extra set of text books at home – this is important for those who miss a lot of school, especially those in upper grades.
  • Nurse’s instructions for replacing feeding tubes or keeping a stoma from closing in case of an Emergency (i.e. if they come out at school) – this should also be in an IHP;
  • School nurse and student (&/or parent) are permitted to speak with the class to briefly explain EoE/EGID and how affects the student (i.e. unable to eat certain foods, etc) to help promote understanding; 
  • Accommodations can be written into an IEP to address food trials or eating issues as well.  Perhaps the child doesn’t want to eat in the cafeteria (or can’t be trusted not to sneak unsafe foods), has food aversions to the safe foods, early satiety problems, anxiety, etc.  An accommodation might include a goal to have the child eat his/her safe food in the cafeteria a certain # of times a week to promote socialization.  Another potential accommodation might be that a teacher or educational assistant will try to ensure that the student will eat a certain amount of his/her safe food a certain # of days a week (whether in the cafeteria or elsewhere), and that goal will be increased in both quantity and time spent per week.  This can be a very helpful accommodation for some of our children with EoE/EGID if the school is willing and able to provide the accommodations.
  • Food in the classroom, whether just keeping certain foods out or even replacing food-based activities with non-food activities, crafts and rewards.
    • Note:  If you are a NJ resident, please also refer to the NJ School Nutritional Policy Q & A (.pdf file), specifically page 5.  
    • Each NJ school district was also to have their own nutrition policy in place by 2007.  
    • Candy is NOT permitted to be given out unless due to medical need or if specifically addressed in a particular child’s IEP!  Class parties are the exception unless the district policy prohibits it during parties as well.  http://www.state.nj.us/agriculture/PolicyQA.pdf 

Most of these accommodations require a Dr’s note, specifically addressing each issue.  Minimizing food in the classroom would be something that you could request on your own, unless you are dealing with a life-threatening allergy, in which case a Dr’s note would be appropriate for that as well.  If you are having difficulty with your school district and are not getting the accommodations and modifications that are necessary and appropriate for your child, you may need to contact (and hire) an educational advocate. 

Important Advocacy Resources:

APFED now has very helpful videos/webinars available on their website as well as on their YouTube channel and will be adding more in the near future. Some of the videos/webinars now include: 


They now also have a specific section for School Advocacy, which includes resources prepared by an educational advocate in Georgia who has experience helping parents obtain necessary modifications and accommodations for their children with Eosinophilic-Associated Disorders (EoE / EGID):

Please take time to visit each of the above helpful advocacy links if you are potentially in need of a 504 plan or IEP for your child with EoE / EGID. 



Wrightslaw:
You can read more about IEPs and 504 plans at Wrightslaw.  This is one of the most helpful educational advocacy sites available.

Discrimination: Section 504 and ADA

IDEA

Americans With Disabilities Act Amendments of 2008 (ADA AA)
http://www.wrightslaw.com/info/sec504.adaaa.htm

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

Special Education Advocacy (advocating for your child)

Individualized Education Programs (IEPs)


Does a Child Need an IEP AND a 504 Plan? (The answer is "No")
http://www.wrightslaw.com/blog/?p=122

Migraines, Medication and Missed Instruction - Requesting Eligibility
This information can be applied to other medical issues, such as Eosinophil-Associated Diseases.
http://www.wrightslaw.com/blog/?p=3036

They also have a couple of helpful BOOKS which might even be found in your local libraries: 
and

Food Allergy Advocate:
This site has information that applies to food allergies in educational settings, including outline suggestions for 504 Plans (with IHP info as well) and Section 504 information including how it differs from IDEA (IEPs) as they apply to kids with food allergies &/or asthma. 

SPAN (Statewide Parent Advocacy Network) of NJ:
“Speaking on behalf of children and youth with special health care needs.”

US Dept of Education:
The US DOE has a new area on their site, designated to info about IDEA, incl. IEPs, early intervention, etc.
(about IEPs)

Office of Civil Rights info about Section 504/ADAhttp://www2.ed.gov/about/offices/list/ocr/publications.html#Section504 
Make sure you find out about your state’s Special Education Administrative Code as well. 
In NJ, it’s at:

In PA, it’s at:

In DE, it’s at:

Education Law Center and the PA School Reform Network (a PA resource)
www.elc-pa.org –  Helpline phone# 800-692-7443 (operated by Disability Rights Network)
  
Education Law Center - “Standing Up for Public School Children”
(a NJ Resource)  
www.edlawcenter.org – ph# 973-624-1815
  
NJ Special Child Health Services:
Once a child (NJ resident, of course) is registered with them, a case manager is assigned to help you access any necessary resources that are available to your child.  Please use the links below to look into this.  It has been a valuable resource to many. 
http://www.state.nj.us/health/fhs/sch/schr.shtml (for an explanation of the Special Child Health Registry)
http://www.state.nj.us/health/fhs/sch/sccase.shtml (Case Management contact numbers)
  
Disabilities Law Program of Community Legal Aid Society (a DE Resource)

PIC – Parent Information Center of DE (another DE resource)
www.picofdel.org (new website launched 10/07) - ph# 888-547-4412

National Dissemination Center for Children with Disabilities
Providing a central source of information for childhood disabilities, IDEA, No Child Left Behind (as it relates to children with disabilities), & research-based information on effective educational practices.

Info about “Other Heath Impaired” (which applies to EE & EGID)

You can also find a lot of great advocacy resources at APFED:

  • Student Information Sheets to help you provide information about your child in a well-organized format.
  • Medical Information Sheets that are invaluable for helping to organize medical information.  These are very helpful to provide Drs and hospitals with well-organized, up-to-date information on the patient (yourself or your child). 
  • A guide for celebrating without food
  • Great ideas for no-food birthday cakes
  • A guide for students with chronic illnesses
  • Tips for obtaining insurance formula coverage through your insurance company.**

They also have an informative section for Adults Living With EGIDs:  http://apfed.org/drupal/drupal/adults_living_with_EGIDs

**Note:  NJ & NY have mandates requiring insurance companies to provide coverage for enteral formulas.  These mandates do not apply to self-funded companies.