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Advocacy:

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. Take a copy of the Americans with Disabilities Act, Title III: Public Accommodations, which is available at the link below. Hopefully it will help you get past the problems that some people are facing in these cases. Here is a portion which seems to apply to our situation:

SUBCHAPTER III - PUBLIC ACCOMMODATIONS AND SERVICES OPERATED BY PRIVATE ENTITIES [Title III]

(a) General rule

No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation.

Sec. 12182. Prohibition of discrimination by public accommodations

(2) Specific prohibitions

(A) Discrimination

For purposes of subsection (a) of this section, discrimination includes

(ii) a failure to make reasonable modifications in policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities, unless the entity can demonstrate that making such modifications would fundamentally alter the nature of such goods, services, facilities, privileges, advantages, or accommodations;

Americans with Disabilities Act – read “ADA Title III: Public Accomodations” - http://www.ada.gov/pubs/ada.htm#Anchor-42728

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, 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.

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 Fair and 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 instruction will begin. Under normal circumstances

(without accommodations), homebound instruction begins after 10 days of absence, but can

be to reduced 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 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, 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.

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.

Note: 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:

Wrightslaw:

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

sites available.

http://www.wrightslaw.com/

Discrimination: Section 504 and ADA

http://www.wrightslaw.com/info/sec504.index.htm

IDEA

http://www.wrightslaw.com/idea/index.htm

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

http://www.wrightslaw.com/info/sec504.summ.rights.htm

Special Education Advocacy (advocating for your child)

http://www.wrightslaw.com/info/advo.index.htm

Individualized Education Programs (IEPs)

http://www.wrightslaw.com/info/iep.index.htm

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

Wrightslaw: Special Education Law, 2nd Edition
by Peter W. D. Wright & Pamela Darr Wright

and

Wrightslaw: From Emotions to Advocacy, 2nd Edition
by Pam Wright & Pete Wright

United Mitochondrial Disease Foundation (IHP/IEP/504 Plan Differences):

Excellent information! This document covers many of the specific issues facing our children, including lost time from school,

feeding tubes, and so on.

http://www.umdf.org/atf/cf/%7B858acd34-ecc3-472a-8794-39b92e103561%7D/IHP%20504.PDF

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.

http://www.foodallergyadvocate.com/504Plan.htm

http://www.foodallergyadvocate.com/Section504IDEA.htm

SPAN (Statewide Parent Advocacy Network) of NJ:

http://spannj.org/BasicRights/

http://spannj.org/

http://spannj.org/BasicRights/what_is_iep.htm

Family Voices:

“Speaking on behalf of children and youth with special health care needs.”

www.familyvoices.org

US Dept of Education:

The US DOE has a new area on their site, designated to info about IDEA, incl. IEPs, early intervention, etc.

http://idea.ed.gov/explore/home

http://idea.ed.gov/explore/view/p/%2Croot%2Cdynamic%2CTopicalArea%2C1%2C

(about IEPs)

Make sure you find out about your state’s

Special Education Administrative Code as well.

In NJ, it’s at:

http://www.state.nj.us/njded/code/current/title6a/chap14.pdf

In PA, it’s at:

http://www.pacode.com/secure/data/022/chapter14/chap14toc.html

In DE, it’s at:

http://www.state.de.us/research/AdminCode/title14/900/925.shtml#TopOfPage

Education Law Center and the PA School Reform Network (a PA resource)

http://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/index.shtml

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)

www.declasi.org/dis.html

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.

http://nichcy.org/

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

http://www.nichcy.org/disabilities/specific/pages/healthimpairment.aspx

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

http://apfed.org/

Some of the helpful information in APFED’s E-Learning section, under Children Living With EGIDs, includes:

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 a section with very helpful information specifically for 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.