Support for Those Living with Adrenal Insufficiency

The Rights of Students with Disabilities

The Rights of Students with Disabilities

OLYMPUS DIGITAL CAMERAAlthough Adrenal Insufficiency is life threatening, our kids look just like everyone else’s kids and school personnel may not understand the dangers they face.  This makes Adrenal Insufficiency(AI) a Hidden Disability.  Luckily there are Federal Laws and Regulations that protect children with disabilities, even if they are hidden.  IEPs under IDEA or 504s under the Civil Rights of Students Act have guidelines that public schools must follow.

This blog is designed to help parents and caregivers understand more about these laws and the ways in which you can and should advocate for your child.  AIU is not as familiar with the laws of other countries, but hope that some of this information will be helpful even if you don’t live in the USA.

Disclaimer: Information in this blog is not meant to replace advice from a physician or attorney and anything read in this blog should not be taken as medical or legal advice.  Please consult your child’s physician and/or your attorney.  Much of what is in this blog has been summarized (links to the information are given).  We encourage you to read as much as you can.

Due to all the information contained in this blog we’ve outlined some steps to follow in this flow chart.  We hope, that after reading this blog, you will have a better understanding of your child’s rights and how you as parents and guardians can advocate for him/her.  We appreciate any feedback on changes you feel would help improve this blog.
large flow chart for sped    Open this in another page and print if you can.  It will help to look at while reading this blog.


IMPORTANT!!!   Be sure to keep copies of all communication with your child’s school.  Use emails or written letters as much as possible so that you always have a record.  You may need these if you need to pursue legal action.
Throughout this document most blue or purple text will link to pages or downloadable materials.
If you’d like to download the flow chart, simple click on it.

Federal disability laws provide the following rights to parents or guardian:
To have their child assessed under IDEA and/or Section 504.
To hold an IEP or a Section 504 meeting with school and school district personnel with an advocate, attorney, and/or experts, if desired, present to better explain the child’s diabetes management.
To develop an IEP or a Section 504 plan that specifically states the child’s needs and the services required to meet these needs.
To be notified of any proposed changes in the child’s plan, to attend any meetings concerning proposed changes and to approve any changes.

Every child is entitiled to a FAPE = Free and Appropriate Public Education
This is a great introduction of FAPE by the Department of Education, please read it!

What is a Public School?

To put it simply a public school is any K-12 school that operates with “public money” and serves children between the ages of 3-21.  So any school receiving state or federal funds is a public school.  There is more than one type of public school: charter schools, many alternative schools, and even some online schools are public schools and must follow Federal Guidelines pertaining to IEPs and 504s.

Here’s a dictionary definition: a school that is maintained at public expense for the education of the children of a community or district andthat constitutes a part of a system of free public education commonly including primary and secondary schools. 


IEP =  Individualized Education Program

A child with a disability who needs specialized instruction qualifies for an IEP.  An IEP will have stated academic goals and objectives based on the individual needs of your child.  Specialized instruction usually means that your child needs instruction in some or all of these ways:

Instruction in a smaller group
Instruction with a different type of curriculum that is used in the classroom
Extra time in instruction
Modified instruction and/or accommodations
Instruction from specialists such as Speech, Physical Therapy….etc.

A child with an IEP does NOT need a 504.

We are working to get a sample IEP added to the website.

Learn More about the Individuals with Disabilities Education Act (IDEA)

Some, but not all children with Adrenal Insufficiency may qualify for an IEP (Individualized Education Program) under “Other Health Impairment”.  

Learn more about each type of disability by clicking the links here:

Under IDEA school health services can include:

administering and/or dispensing medications
planning for the safety of a child in school
chronic disease management
conducting and/or promoting education and skills training for all (including the child) who serve as caregivers in the                 school setting.

These services are decided during the IEP process, the school must then provide these services as part of the child’s education program.

504 = A Plan for a child with a medical condition or disability who DOES NOT need specialized instruction.  If your child doesn’t qualify for an IEP, he/she would most likely qualify for a 504.  (children do not need both) A child with a 504 will have accommodations and modifications based on their medical condition, but does not need specialized instruction for academics.  Some accommodations and modifications could include:

More frequent breaks for: rest, snacks, bathroom etc.
Extra time for assignments
Someone to help take notes

See a sample 504 here:  (note that it refers to the health plan)
Endocrine disorders are listed under the “Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 1973”

In our opinion this means that any child with Adrenal Insufficiency should qualify for a 504 plan at their public school.  As a parent you may request a 504 evaluation and meeting.  This must be done at the school’s expense, however it will imperative that you have a statement from your child’s physician stating that AI is life threatening and an explanation of any symptoms that could affect your child’s ability to learn.

Health Plan = A written plan to address the medical needs of a student.  Some schools may include these provisions in the IEP or 504, some will prefer a “stand alone” type plan.  These plans, for a child with AI, should include some of the following.

An explanation of Adrenal Insufficiency
Steps to ensure medications are given accurately and on time
A plan to keep your child healthy at school (extra snacks, electrolyte drinks etc.)
An action plan in case of illness and/or emergencies

See a sample health plan here.

Parent agreement for IEPs, 504s and Health Plans.

All of these documents must have a parent or guardian signature.  If you DO NOT agree with what is stated in the IEP, 504, or Health Plan indicate that when you sign.  If there is not a place to indicate your disapproval do not sign it and ask for mediation or an additional meeting.  If your district has health plans that are separate from the IEP or 504 (many do), make sure that the IEP or 504 makes reference to the Health Plan.  This will help assure that the health plan is followed.

What can I do if I don’t agree?

As stated above sign only if there is a place to indicate that you disapprove.  then…..
Ask for an additional meeting with a facilitator or mediator.
Make sure you’ve provided all the documentation about your child’s medical condition(s)
Ask for an outside evaluation of your child.  (a second opinion)
I’ve you’ve exhausted all your options file a written request for a Due Process Hearing under either IDEA (if it’s an IEP) or Section 504.

Due Process Hearings

Your public school must have due process procedures in place.  Acronyms you may encounter during this process:      SEA = State Education Agency   &   LEA = Local Education Authority

Wording from the federal regulations about due process:
Under 34 CFR §300.532(a), a parent of a child with a disability who disagrees with any decision regarding placement under 34 CFR §§300.530 and 300.531, or the manifestation determination under 34 CFR §300.530(e), or a local educational agency (LEA) that believes that maintaining the current placement of the child is substantially likely to result in injury to the child or others, may appeal the decision by requesting a due process hearing.  Whenever a hearing  is requested under 34 CFR §300.532(a), the SEA or LEA is responsible for arranging the expedited due process hearing, which must occur within 20 school days of the date the complaint is filed.  34 CFR §300.532(c)(2).  The hearing officer must make a determination within 10 school days after the hearing.  Id.

Read more about the Due Process

Links to the forms for each State are here.  To request your due process hearing you’ll need to fill one out the form for your state and send it to the address stated on form.  Always keep a copy for your records!
States for which we couldn’t find an online form are listed below.
Hawaii  1-808-586-3230
Massachusetts   (781)338-3000
Montana  1.888.231.9393    (406) 444.3095
New Hampshire  (603) 271-3776
North Dakota   1-866-741-3519    701-328-2277
What if I still can’t get results?

The US Office of Civil Rights is responsible for oversight of both IDEA (IEPs) and 504 plans.

If the due process hearing doesn’t yield the results that will keep your child safe FILE A COMPLAINT with the Office of Civil Rights stating “extraordinary circumstances.”

In 1998 the Office for Civil Rights OCR explained that when “a school division’s decision that a student is ineligible for Section 504 services could result in death or serious illness, there is a basis for . . . ‘extraordinary circumstances’ . . .”
I found an example of an “extraordinary circumstance” in this link.

Since the failure to administer Solu-Cortef® and oral medications in a timely manner can result in permanent disability and death, “extraordinary circumstances” seems, in our opinion, easy to prove.

Find your Regional Civil Rights Office or lodge a complaint

In addition, the Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 1973 means that children with AI cannot  “be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance….”

So schools must allow your child to participate in sports, field trips and other extra curricula activities.

“Under the Section 504 regulation, a recipient that operates a public elementary or secondary a education program has a number of responsibilities toward qualified handicapped persons in its jurisdiction. These recipients must:
Undertake annually to identify and locate all unserved handicapped children;
Provide a”free appropriate public education” to each student with handicaps, regardless of the nature or severity of the handicap. This means providing regular or special education and related aids and services designed to meet the individual educational needs of handicapped persons as adequately as the needs of nonhandicapped persons are met;
Ensure that each student with handicaps is educated with nonhandicapped students to the maximum extent appropriate to the needs of the handicapped person;
Establish nondiscriminatory evaluation and placement procedures to avoid the inappropriate education that may result from the misclassification or misplacement of students;
Establish procedural safeguards to enable parents and guardians to participate meaningfully in decisions regarding the evaluation and placement of their children; and
Afford handicapped children an equal opportunity to participate in nonacademic and extracurricular services and activities.”

The Office for Civil Rights

Helpful Links and Additional Resources

Letters for your child’s school
A letter from AIU with our suggested guidelines for schools and children with Adrenal Insufficiency.
Sample request for formal evaluation
Sample wording for your Civil Rights Complaint
Sample release to allow Solu-Cortef® injection
Samples of Health Plans and 504s…..we hope to add more + some sample IEPs

Letters and Documents about Adrenal Crisis and Emergencies
Letters written for AIU from physicians:  you may use these if you don’t have time to get something from your child’s
physician and need something asap.  We recommend you get one on file from your child’s physician even if                        you use ours.
Adrenal Crisis Pathway created by Prof. Peter Hindmarsh
Letter about the need for protocols by Prof. Peter Hindmarsh
Emergency Letter (you fill in the blanks) created by Prof. Peter Hindmarsh

Review these sites for some tips on attending IEP and 504 meetings.

This is a letter found on the website stating that prescriptions medications may be kept on site at schools when needed.

Definition of School health services and school nurse services that can be included in an IEP.
Health services that are designed to enable a child with a disability to receive FAPE as described in the child’s IEP. School nurse services are services provided by a qualified school nurse. School health services are services that may be provided by either a qualified school nurse or other qualified person.,root,regs,300,A,300%252E34,

What was previously called “school health services” in IDEA was expanded in its 2004 reauthorization to distinguish between services that are provided by a qualified nurse and those that may be provided by other qualified individuals. States and local school districts often have guidelines that address school health services and school nurse services. These may include providing such health-related support as:

special feedings;
clean intermittent catheterization;
the management of a tracheostomy;
administering and/or dispensing medications;
planning for the safety of a child in school;
ensuring that care is given while at school and at school functions to prevent injury (e.g., changing a child’s position frequently to prevent pressure sores);
chronic disease management; and
conducting and/or promoting education and skills training for all (including the child) who serve as caregivers in the school setting.

Determining what related services a child needs is the responsibility of the child’s IEP team, the group that develops the child’s individualized education program. Key information for decision makers will be available from the evaluation process, since a child must be assessed in all areas related to his or her suspected disability. The IEP team must look carefully at the evaluation results, which show the child’s areas of strength and need, and decide upon which related services are appropriate for the child. The school must then provide these services as part of the child’s education program.

We hope all of this information helps as you advocate for your child.  We’d love to hear your feedback and suggestions on how we can improve this blog.  We also hope to add information about working with Private Schools and Preschool/Childcare programs and are doing some research in that area now.


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