Asthma & Allergies at School. Is a Formal or Informal Process Best? c. 1991
Sometimes, all you need to do is provide information about asthma and talk informally with school staff to ensure your child's well-being at school. But asthma and allergies can affect so many aspects of a child's education that informal conversations may not provide the comprehensive awareness and planning that you think is necessary. Informal arrangements that depend on the good intentions and convenience of busy people can be unreliable.
In some cases, taking more formal steps such as developing a written plan or using procedures outlined in federal and state education laws can lead to better under-standing and cooperation. The goal is to make asthma management easy and safe so the child can focus on learning.
How do you decide when to take formal steps? It depends on the needs and priorities of your child and your family. Also consider the quality of parent-school communication and cooperation.
Look at school policies to see if they promote the safe and appropriate use of medication and good health management. In some schools, once you inform them your child has asthma or other health needs, the principal or school nurse takes the lead. They collect and organize necessary information and work with you to define appropriate guidelines and procedures. They also update plans as student or staff needs change.
However, knowledge, attitudes, resources and policies vary from school to school and teacher to teacher.
Check with other parents whose children have similar needs. How knowledgeable and supportive are school personnel? How responsive are they to individual needs? What is the quality of school health services? How flexible are teachers about a child's variable tolerance for exertion?
In some situations, parents may be inhibited about taking formal steps by the same fear of authority and competing loyalties and priorities that inhibit our children from sharing their fears or troubles with us.
Parents may fear that calling attention to a problem such as inappropriate restrictions in gym class or ignoring a child's request for medication, will result in losing a teacher's good will or being labeled "overprotective" or a "trouble-maker." And unfortunately, for many parents of children with asthma and allergies, it does.
If a child's health, safety, education or peer relationships are suffering and parent's individual or collective attempts to inform and work with teachers and other staff do not improve or remedy a problem, you may choose to seek outside support and advice from a host of organizations and government agencies whose role is to protect your children's educational rights.
The following letters illustrate two different uses of Section 504 of the Rehabilitation Act of 1973, a federal law that prohibits discrimination on the basis of disability.
One letter describes how parents exhausted the typical sources of support within the school district and finally sought help from the U.S. Department of Education's Office for Civil Rights. The parents chose to take advantage of the early resolution mediation process which does not result in a finding or ruling against the school, but helps parents and school staff work out an agreement that ensures that a child's health and educational needs are met.
The Office for Civil Rights also can monitor to ensure that the school carries out the terms of the agreement.
In another letter, a parent describes how sharing information about Section 504 stimulated a rewarding parent-school collaboration. The school nurse, the principal, and her son's current and future teachers are working together, developing options and expanding possibilities that will increase the school's flexibility and benefit her child as well as others school-wide.
Dear Ellie,
My son, 11, has had asthma and severe food allergies since age three. When he entered school, I supplied written information which included my son's allergist's letters, written detailed procedures, and updated emergency cards. I also had many conversations with the school principal, secretary and teachers. I had no reason to suspect that there were problems.
Then, in second grade, my son had a serious exercise-induced asthma attack at school which was not handled as the emergency it was. Later, after repeatedly talking with my son, I learned that the principal had been denying him his asthma medicine, sometimes on a daily basis!
After that severe episode, I started noticing changes in his personality. My son became very fearful of physical injury and anxious about attending school in general. He was diagnosed as having learning disabilities. In contrast, at home and around the neighborhood, he was generally fine.
In the fall of his fourth grade year, my son had an anaphylactic reaction at school when the cafeteria changed a recipe, adding soy protein to hamburger, without notifying anyone, even though I had informed the school that my son had a severe soy allergy. (He wears a MedicAlert bracelet.) Again, the principal did not recognize the seriousness of my son's reaction, did not call an ambulance, and offered no assistance.
My attempts to enlist the superintendent or the school administration in remedying the problem were futile. I had no alternative but to involve the U.S. Department of Education-Office for Civil Rights (OCR).
Since OCR mediated our agreement with the school, my son has been doing fine. He has been able to go school without unnecessary anxiety for the first time in five years. Last year was a very positive, relaxed year. He came in first in the 50-yard dash in his first field event (five schools participating) and is now interested in competing in other running meets.
In addition, he does not have learning disabilities. It seems his learning problems were caused by the anxiety and insecurity he felt during the years that the principal (since resigned for unrelated reasons) had denied him his medication and had ignored two life-threatening emergencies. Now my son knows that should a situation arise when he cannot help himself, someone else will. And, if the school does not stick to the agreement, OCR will be there to enforce it. Phyllis R. _____
Dear Ellie,
Thank you so much for all your help! I thought you might be interested in our progress. We have established a new medication/ monitoring program for my son, Bob, which, one month into the program, has been very successful.
When I first contacted you, the school nurse, the principal and I were at odds over providing Bob with his medication safely. I, naturally, didn't want Bob climbing two flights of stairs (usually alone!) to get his inhaler during an asthma episode. The nurse, who's responsible for 400 students plus the staff, couldn't count on being able to drop everything and run to administer his medication. The principal was unwilling to allow Bob, with another student, to ride the elevator to the nurse and he couldn't justify disrupting the classroom by sending the teacher.
The concept of "self-administered inhaler" had the effect of putting the three of us on the same side. No elevator ride was necessary. The role of the nurse changed from "primary care provider" to "program manager". She's now responsible for assessment, education, communication and evaluation of the participants. She still provides direct care but on a secondary or referral level in instances where Bob doesn't respond to his initial treatment or for unusually low Peak Flow readings.
With three of us on the same side, we were ready to take on the State of Connecticut if state regulations prohibited our plan. No such action was necessary. The state leaves these decisions to the local Board of Education, we found out, and our B.O.E.'s policy is to decide such matters on a case by case basis.
With a written, safe, medical plan implemented, I was now ready to take up the issue of "appropriate" education for Bob. He has missed a month of school this year with intermittent absences. He experiences restlessness and problems with concentration (intermittently) as side effects of his medications.
I requested a meeting with the principal and appropriate staff to discuss the issues. Thanks to all the literature you sent me, I was able to "enlighten" the school staff regarding Section 504 and the "hidden handicap" of asthma. I had developed an agenda for the meeting using several suggestions from your literature and was very surprised by the spirit of cooperation that prevailed throughout the meeting.
The teachers have decided to develop "pro-active" lists of alternative activities for times when Bob's meds are causing him problems. His classroom teacher was able to provide suggestions for how to deal with him which she has found helpful. They are also developing lists of alternative activities for Bob for days on which he can attend school but not participate in recess or gym.
The most exciting decision (for me) made during the meeting regarded dealing with the absences. I had originally requested that he have a "homework helper" for the first three days that he was out but that he should have some form of assistance or tutoring--perhaps on a sliding scale depending on how long he was out--after three missed days.
To my surprise, two teachers spoke out immediately that this idea would be too limiting. One teacher said, "What if he's only been out two days, but those were the days I introduced one the most important concepts of the year?" Another teacher emphasized that the worksheets sent home don't begin to represent what was done in school that day. So it was decided "unanimously", that Bob would be entitled to tutoring whenever the classroom teacher felt it was necessary -- no matter how many (or how few) days he's missed! This is a radical concept for a school, which has an established policy of providing tutoring only if ten consecutive schools days are missed.
We decided we could try to implement this educational plan without a formal I.E.P. at this time, as there appears to be no conflicts. Should the tutoring needs extend beyond the in-house staff (teacher, special education aides) we may have to go ahead with an I.E.P. in order to justify funding.
As you may gather from this, Bob's asthma has been medically and educationally a management challenge. I am so grateful for your assistance. I'm sure be calling you again to "pick your brain" as I continue. The school staff is very interested in your work. Now, the nurses and I are discussing developing a school-wide program for inhaler self-management next fall. Peg H.
Contact local support groups and national parent networks for more information about becoming an effective advocate for your child.
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