MAKING PAPERWORK WORK FOR YOU
Evaluations and assessments are part of our children's lives, like it or not. In the Special Education system, evaluations have to be done every three years. It can be very discouraging to hear all about the things that our children cannot do, but assessments and evaluations can be of great help to our children. They can help to obtain services and help to decide what the child needs.
An assessment gathers information about the child and gives a basis for deciding what to do next. It should look at the child's strengths, weaknesses, learning styles, temperament, interests and preferences. Assessments can identify specific skills necessary for an activity and what strategies can be used in teaching the child. Assessments are ongoing. The following statement reinforces the idea that assessments are ongoing, "The design of individualized inclusive curricula for students with disabilities is a cyclical, repeated process of assessment, planning, teaching, and evaluation." Polloway & Patton 1997 Parents have a vital part in giving information about the child in assessments and evaluations.
In an article entitled "Functional Sensory Assessment," George J. Zimmerman says, "Not all children who are deaf-blind are totally deaf and totally blind. Therefore, for teaching orientation and mobility skills and techniques, it is important to conduct an ecologically sound functional assessment of a student's sensory abilities. This assessment will help the team develop appropriate instructional strategies to enhance the student's use of residual sensory input. The important areas to assess are the student's daily environments and his or her use of visual, auditory, and tactile skills." Although orientation and mobility skills are mentioned specifically, a functional assessment is essential in determining goals and strategies in all areas of learning.
When doing an assessment, consider the following questions:
What do you want to know?
Why do you want to know it?
What are the best ways to get it?
How will you use it once you've got it?
Another aspect of making paperwork work for you is keeping your child's records. You need to keep track of your child's medical, school and other records. One parent shared an idea that was valuable with medical records, "I have discovered that it is very helpful to keep several copies of a brief history of my child with me. Then, whenever I see a new specialist (medical or educational), I hand them a copy and it saves a lot of time. They think I am organized (little do they really know) and we start the relationship on the right track."
Make sure you get copies of all written information about your child (records, reports, etc.). Write down the names and phone numbers of everyone you talk to. Having this information available may be helpful to you later on. Keeping records will help you become an important coordinator of services and a better advocate for your child. It's a good idea to keep them all together in one place.
One parent used carbonless papers to write notes on to give to the school. The copy was kept at home and thus a record of what was sent to school was easily saved at home. Examples of records to keep are:
--Letters and notes (from doctors, therapists, etc.)
--Medical records and reports
--Results of tests and evaluations
--Notes from meetings about your child
--Therapists' reports
--IFSP and IEP records
--Your child's developmental history, including personal notes or diaries on your child's development
--Records of shots and vaccinations
--Family medical histories.
The following is a hint from the Special Child Magazine (www.specialchild.com):
My youngest daughter has a very complex and unusual disease; she has Complex IV Deficiency (mitochondrial disease), as well as panhypopituitarism, autonomic dysfunction and ClOP. Here's a suggestion that has helped us immensely:
I have a backpack that I take everywhere with Caitlin. The backpack contains everything that I might possibly need should Caitlin "crash" at the most inopportune time. The pack includes a stethoscope, BP cuff, glucometer, thermometer, stuff to measure fluids in & out, etc., and several little pouches (containing snacks, extra meds, etc.). It also includes a notebook to keep notes in, as well as a small address book with all of my emergency numbers, including our pediatrician's number. The notebook includes five sections:
1) DAILY SCHEDULE - this is one page that includes what and when we do everything that is essential to keeping her stable on any given day.
2) MEDS - This includes a list of meds written as the doctor orders and includes the times and dosages to be given.
3) HOME CARE - This has a list of all the treatments, interventions, therapies etc. that it takes to get her through one 24 hour period.
4) HOSPITAL CARE - It includes do's and don'ts that we have encountered in the hospital. For instance, we use D10 normal saline, instead of D5 half normal saline, for IV fluids. This hopefully keeps us (them) from making the same mistakes over and over again.
5) Last but not least: RECENT MEDICAL SUMMARY AND HISTORY - We try to update a summary, at least yearly. My pediatrician dictates a fairly detailed, but as brief as possible history and summary, geared to be read by a physician in any ER, anywhere, that is totally ignorant of mitochondrial disease, should we all of a sudden show up.
We also keep a chronological summary in here that includes all the vital information, as well as major milestones in her disease. It includes the individual evaluations done for her disease as well.
If you don't need the whole backpack, then the notebook is the key. Most doctors appreciate the info and are a little more eager to listen to parents when you have a little documentation. - J.S., Russellville , AR
Here are some sample forms for you to use or to get ideas from so that you can create you own record keeping forms.
"Sample Record-Keeping Worksheet" - From the NICHCY Publication, "Accessing Programs for Infants, Toddlers and Preschoolers with Disabilities". The entire publication is in the IEP/IFSP Team section of this book.
"Telephone/Visit Log" - A sample worksheet from the Learning Disabilities Council, Inc.
“Report Organizer for Child's Reports” – Another sample worksheet, also from the Learning Disabilities Council, Inc.
HomeTalk A Family Assessment of Children Who are Deafblind
"Bringing it All Back Home: Family Driven Assessments and Intervention for Children who are Deafblind" - From the See/Hear newsletter. It has some opinions about assessments and evaluations that parents have shared. There is a website where you can give your opinion also.
"The van Dijk Approach to Child Guided Assessment" - From the See/Hear newsletter. It talks about a CD Rom entitled "Child-Guided Strategies for Assessing Children who are Deafblind or have Multiple Disabilities" The CD Rom is available for parents to check out at the Educational Resource Center at the Utah Schools for the Deaf and the Blind.
"Follow the Child - Approaches to Assessing the Functional Vision and Hearing of Young Children with Congenital Deaf-Blindness" - From the California Deaf-Blind newsletter, Winter 2001 issue. It talks about how difficult assessments can be with children who are deafblind and gives good strategies to follow.
"Psychological Evaluation of Children who are Deaf-Blind" is a DB-LINK publication. It answers frequently asked questions about psychological evaluations for children who are deafblind.
DISH stands for Deafblind Intervention Strategies for the Home,
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