Tuesday, August 30, 2011

BACK-TO-SCHOOL CHECKLIST!

School Shopping List: Markers, Glue Sticks, Pencils, Hand Sanitizer, Pulse Oximeter, Defibrillator (AED), Individual Education Plan (IEP)….. Does your heart kid have everything on his/her list?  

Some school necessities are easier to come by than others.  Many schools currently have a Pulse Oximeter in the nurse’s office and several states require AEDs in their schools, although the requirements vary by state. Some states require teachers or school coaches to be trained in AEDs use and others offer grant money to encourage schools to purchase AEDs. The state of Oregon recently passed legislation that mandates AEDs in schools by 2015. New York, Illinois, and Pennsylvania are now mandating the placement of AEDs throughout their schools and AED legislation is pending in many other states. House Bill 1919/Senate Bill 2095 would require AEDs in middle schools, high schools, colleges and universities beginning with the 2012 school year and in elementary schools by the 2014-2015 school year. Click here to help your school launch an AED program.

Another important item on the back-to-school checklist is knowing your child’s educational rights. According to the Department of Education, the Individuals with Disabilities Education Act (IDEA) requires all public schools to develop an Individual Education Plan (IEP), also known as the Section 504 plan, for every student with a disability who is found to meet the federal and state requirements for special education. The IEP must be designed to provide the child with a Free Appropriate Public Education (FAPE). The IEP refers both to the educational program to be provided to a child with a disability and to the written document that describes that educational program. At the end of twelfth grade, students with disabilities will receive an IEP diploma if they have successfully met the IEP goals. If they have met the requirements for the high school diploma, then it may be given in place of the IEP diploma.

The IDEA requires that an IEP must be written according to the needs of each student who meets eligibility guidelines under the IDEA and state regulations, and it must include the following:
  • The child's present levels of academic and functional performance
  • Measurable annual goals, including academic and functional goals
  • How the child's progress toward meeting the annual goals are to be measured and reported to the parents
  • Special education services, related services, and supplementary aids to be provided to the child
  • Schedule of services to be provided, including when the services are to begin, the frequency, duration and location for the provision of services
  • Program modifications or supports provided to school personnel on behalf of the child
  • Least Restrictive Environment data which includes calculations of the amount of time student will spend in regular education settings verses time spent in special education settings each day
  • Explanation of any time the child will not participate along with nondisabled children
  • Accommodations to be provided during state and district assessments that are necessary to the measuring child's academic and functional performance
  • The student should attend when appropriate. If the student is over 14 they should be invited to be part of the IEP team.
  • Additionally, when the student is 16 years old, a statement of post-secondary goals and a plan for providing what the student needs to make a successful transition is required. This transition plan can be created at an earlier age if desired, but must be in place by the age of 16.
IEPs also include other information such as a healthcare plan or a behavior plan for some students.  For children with a CHD, an Individual Healthcare Plan (IHP) is developed by the school nurse with written input and approval of the primary care physician and other healthcare providers. The IHP identifies your child’s medical needs at school and how those needs will be met. The team considers the nature and complexity of the child’s condition to ensure their health and safety.  Factors include support needed during the entire school day, including the classroom, physical education, the school bus, behavior needs, field trips, and extracurricular activities. 

Speak with your child’s health care providers about his/her specialized needs in school and request that they document your child’s needs in writing to share with the school. Request a meeting with your child’s school nurse to discuss the development and implementation of an Individualized Health Plan for your child.

Once your child’s IEP/IHP is developed it is important to remember the following:
  • Ensure that training is provided
  • Ensure the IHP is being implemented
  • Contact appropriate staff periodically to ensure plan is working
  • Check with your child frequently
  • Keep your child’s health care providers informed
  • Inform your school of any changes
  • Update the IHP at least annually

Best Wishes for a happy and successful new school year!

Wednesday, August 10, 2011

A Disclaimer

For those of you who know me personally, you know why I began this blog. For those who do not, I'd like to tell you "why."

First off, it's funny to me to say that I blog - no offense to my fellow bloggers out there - I subscribe to many beautifully written blogs and you don't write fluff!  But I have a science degree, I've worked in the healthcare industry since I was 18 years old, and I've been in clinical research for several years, therefore when I write, I do so based on what I have read in medical journals.  I present what's established by the medical community.

I was an inquisitive child and I am an inquisitive adult, therefore I am always asking the question "why."  When my son was diagnosed in utero with Hypoplastic Left Heart Syndrome, I had A Lot of questions.  Four repairs later (Arch repair, Norwood, Glenn, Fontan) I still have questions.  Why the Arch repair? Our doctors thought Carter had a chance at being two ventricle. Why it didn't work and he had to become single ventricle? It just didn't work for him. Some questions are easier to answer.

Over the past seven years I have met many heart families. An amazing bunch you all are I've learned. Some of their children are doing great, some struggle, and some we have lost. That makes me ask WHY??  Some questions are harder to answer.

My son has HLHS. The future is bright, but there will always be questions.

So that's why I write this blog.

And here's my disclaimer:

I am not a doctor; I do not give medical advice. I'm just a mom of a heart kid who will always have questions. I hope that through my asking questions I can answer some of yours too.

Julie

Monday, August 8, 2011

New Research Survey for Post-Fontan Patients!

The University of Michigan C.S. Mott Children’s Hospital has an important Research Study for children who have completed the Fontan (third stage) surgery. This research study is to evaluate Protein Losing Enteropathy (PLE), and Plastic Bronchitis (PB) in post-Fontan patients. You are invited to complete this anonymous survey whether your child has or has not been diagnosed with PLE or PB. This information will help the doctors learn more about PLE and Plastic Bronchitis and find a way to successfully treat these complications.