Eosinophil

Welcome to the NJ/PA   Eosinophilic Support Group

 

 

 

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 services such as speech, occupational therapy, etc, 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 (again, speech, 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, 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 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.  An IEP provides more protection under the law than a 504 plan. 

 

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 (usually

after 10 days of absence, but can be to reduced as few as 2-3 days);

*      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);

*      Food in the classroom: whether just keeping certain foods out or even replacing

food-based activities with non-food activities, crafts, and rewards.

*      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.

 

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.

http://apfed.org/advocacy.htm

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:

http://www.wrightslaw.com/

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

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

 

They also have a couple of helpful books: 

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

 

 

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)

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/

 

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

http://apfed.org/

 

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.