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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 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 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
EE/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
EE/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 EE/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:
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
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
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 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)
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.
Info about
“Other Heath Impaired” (which applies to EE & EGID)
http://www.nichcy.org/disabilities/specific/pages/healthimpairment.aspx
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.