The Atypical HUS Foundation

IHP - Individual Health Plan

An IHP or Individual Health Plan is an extremely useful tool for individuals with special health issues, allowing a formal and organized format for school personnel to help maintain a healthy learning environment.

For an overview of aHUS & Education Topics, click HERE .

Education Issues - Some basics about the P.E.T Process,

I.E.Ps, 504s, and IHPs 

(Similar Version, suitable for Any Rare Disease, click HERE )

School Nurse Resources, click HERE.

For additional information on school-related topics.

Global Genes Webinar and Rare Toolkit:

Click HERE to view an Aug 2015 webinar by Global Genes 

Click here for the Global Genes Toolkit on Rare Disease Patients & School

 

Sample text for an IHP for an elementary school age child appears below.  To better illustrate the type of wording found in an actual IHP, this sample format represents what might be in an IHP for the rare disease aHUS. 

Helpful tips for constructing an IHP for any student with

a rare disease diagnosis are marked in green.  

 

Sample IHP  Individual Health Plan by Linda Burke, M.S.Ed.

A Public Service provided by www.atypicalhus.org. Questions?  Contact Linda@atypicalhus.org

 

 

An Individualized Health Plan for:

 

Student Name ___________________________    IHP Date: ___9/14/13 ___

Student DOB:  ________________8/24/05____________________________

Grade:  ___Third Grade___________  School: _________________________

 Diagnosis:   _____ atypical hemolytic uremic syndrome (aHUS) ____________

 

 

     Student X has been diagnosed in 2009 with the ultra-rare disease atypical hemolytic uremic syndrome.  Atypical HUS is a genetic disease caused by chronic impairment of part of the body’s immune system, resulting in unpredictable and serious damage to multiple organ systems involving cardiac, gastric, or neural issues for the aHUS patient.  FMI about aHUS, visit www.atypicalhus.org   Give a brief description of the student’s rare disease in basic terms that are easy for school staff to understand. Provide one or more resources that that staff can visit to learn additional information about the disease.

 

Student’s Name is currently presenting with _____   Describe medical aspects or disease symptoms that school staff might observe, particularly those that impact learning.  Include such things as central lines, medications, infusion or dialysis routines, and other aspect of patient care or issues as well as clinical aspects such as anemia, vision concerns, a compromised immune system,  or other medical findings. Parents report that _____   Describe your child’s symptoms, particularly those that may impact learning.  Detail specific issues that may impact learning which may include things such as fatigue, difficulty with focus/attention, or absence rates caused by medical treatment.     

 

 

GOAL 1     (Goals should list school/classroom health concerns for the student.)

Compromised immune status related to disease and treatment.  School will make efforts to minimize Student X’s contact with communicable illness microbes. 

Plan:  (Plans should list steps the school staff, school nurse, or classroom teacher will take to address the school/classroom health concerns for the student.)

1.       Classroom cleaning:  Custodial services will be notified by school nurse regarding increased frequency and details.

2.      At the start of the school year, the school nurse will send a letter to all families with students in Student X’s  grade level,  informing them that a child in that grade is susceptible to viral and bacterial infections and requesting that they keep their children home if fever or fever with other symptoms are present.  A follow up reminder letter will be sent in January.

3.       Teacher and school nurse will have frequent communication related to classroom illnesses.  Main Office secretaries will be aware of this situation, so absentee call- outs can be referred to school nurse for evaluation.  School nurse will contact Student X’s family to inform them of classroom illnesses or health concerns in that grade level.

4.          Frequent hand washing/desk washing protocols will be in effect for all in the classroom.

5.       Student X will have his (her) own classroom cubbie and hall locker.  His (her) locker will be at the end of a row to reduce viral/bacterial exposure from other students and their belongings.

6.            Student X will be seated in an area of the classroom that is not in a ‘high traffic’ location (i.e. not next to a doorway or pencil sharpener). 

7.       Allied Art and special area teachers will be notified.  Computer lab keyboard and mouse will be cleaner prior to Student X’s use.  Art teacher will be notified re:  the need to either use dedicated supplies or specialty art supplies that have been wiped with a disinfecting sheet between student uses.  Communication between Allied Arts staff, special area teachers, and the student’s family as needed to address use in these settings.

8.      Student X will bring a container with his own items to minimize any cross contamination with commonly used classroom items (pencils, crayons, markers, glue, left-handed scissors, etc.). Teacher will notify parents of any special supplies he (she)  might need.

 9.     Student X will carry a small tote or pack with extra school supplies, cleaning wipes, hand wipes, and any other individual supplies which the family physician or school nurse suggest as appropriate to minimize his (her) contact with communicable disease microbes.  (You may wish to consider a zippered Case-It to hold supplies.)

10.     Cleaning wipes for his classroom and Allied Arts classes will be provided by custodial services and distributed by the school nurse to all teachers as needed.

Goal 1   Information details what needs to take place within the classroom environment to minimize physical health risks to the student.  These suggestions act merely as examples to trigger ideas in creation of an Individualized Health Plan (IHP) for any student with a rare disease or chronic illness.

 

 

GOAL 2

Student X will maintain socialization.

 

 Plan: 

  1. Student X will participate in all classroom and school activities.

 

    2.      If the teacher deems a classroom activity, special event, or field trip to be problematic regarding the student’s health, that teacher or special staff person will contact the school nurse for discussion of the concerns.  The school nurse will contact Student X’s family to review the situation and request family input.  (Student health is a collaborative effort among all parties.  Be proactive regarding school policies, programming, and opportunities or concerns – begin discussions as they arise, rather than passively waiting to be contacted.

     3.    If Student X has any extended periods of absence from school, all efforts will be made to maintain his connection to his peers and classroom through the use of technology.  (Pending accord with individual school district policy, students can attend class by utilizing remote means such as Skype. Grahamtastic Connection is dedicated to loaning laptops for educational use to hospitalized or chronically ill children, may be an option to explore in such cases.)

 

 

GOAL 3

Staff will be alert and aware of potential for ______  (List medical events, daily medication cycles, access issues such as central lines or catheters, drainage or site dressing concerns, seizure or symptoms, and so forth.)

 

Plan:

1.       Staff who work with Student X will be educated by the school nurse about signs of _________  (Use your list from Goal 3 above.  Each item listed should have its own plan regarding first aid in the classroom, notification of the school nurse, and school medical policy/protocol in the event that event occurs.)

 

 

 

GOAL 4

Disease activity may be triggered by dehydration, sun exposure, exposure to certain viruses or bacteria, or impact to the body of an aHUS patient.  (List environmental concerns or student actions that may cause a chronic illness, acute event or specific symptoms to arise.)

 

Plan: 

 

  1. Staff will notify nurse if Student X exhibits fatigue or behavioral changes particularly after the events such as those noted above.

    2.   The school nurse will carefully assess Student X and notify the family with concerns regarding such circumstances or events.  (Provide an itemized plan for every concern or potential issue noted in Goal 4.)

 

 

 

GOAL 5

  1. 1.      Communication will be maintained between the school, family, and medical care providers as indicated below.  (Provide specific contact information, including notations about who handles emergency situations. Consider guidance for school events such as field trips or issues such as substitutes, etc.)

 

Plan:    

  1. Pediatrician:  Name of Physician, Practice Contact Info
  2. Specialists:    Name of Physician, Specialty, Practice Contact Info
  3. Parent/Guardian:  Names, Home Contact Info,  Mobile Contact Info, Emergency Contact Alternatives
  4. School:  Primary and Emergency Contact Info
  5. Student X’s preferred Hospital and/or Clinic:  Contact Info

 

 

 

 

 

 

 

 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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