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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.