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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
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 EE 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
tutoring, 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 tutoring 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 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.
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.
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 EE/EGID
(so the child isn’t penalized for these);
Reducing the time
before homebound instruction or tutoring can start - normally
after 10 days of
absence, but can be to reduced as few as 2-3 days if needed.
(Note: this
particular accommodation cannot be written into a 504 plan,
but must be
addressed in an IEP.);
Extra set of books
at home (duplicate of the ones at school) – 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);
School nurse and
student (&/or parent) are permitted to speak with the class to
briefly explain
EE/EGID and how affects the student (i.e. unable to eat certain
foods, etc), to help
promote understanding;
Food in the
classroom: whether just keeping certain foods out or even replacing
food-based activities with non-food
activities, crafts, and rewards.
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 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.
APFED has created some .pdf files, which
they have on their site. They are very
helpful.
One particularly informative article is
titled “Advocating for Your Child at School”.
http://apfed.org/downloads/Becoming_Your_Child’s_Advocate_2006-2.pdf
You can read
more about IEPs and 504 plans at Wrightslaw:
Discrimination:
Section 504 and
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
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/BasicRights/what_is_iep.htm
Family Voices:
“Speaking on behalf of children and youth
with special health care needs.”
US Dept of Education:
The
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)
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)
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.
You can also find a lot of great advocacy resources at APFED:
Some of the helpful
information in APFED’s
Advocacy section 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.**
APFED’s Fact Sheet
about Eosinophilic Disorders (2 pages), which can be found at
http://www.apfed.org/downloads/Fact_Sheet_Oct.2007_Eosinophilic%20Disorders.pdf
.
(We recommend you print & keep a copy
of the fact sheet.)
**Note: NJ & NY have mandates requiring insurance
companies to provide coverage
for enteral
formulas. These mandates do not apply to
self-funded companies.