E-Accountability Introduction
by Betsy Combier

You are a parent/guardian/friend of a child that you 'know' is just not "right". He or she may not have been normal at birth, or may have shown you his or her uniqueness several years later. Perhaps he/she never makes eye contact; never seems to sit down, doesn't enjoy doing 'normal' children's games, doesn't see, listen, or hear you. You have his/her hearing tested many times, hoping that a simple hearing aid will bring this charming, and adorable individual 'back' into the world that we all have to live in. Sooner or later, you take your little adorableness to a person who gives him/her a Test. The Test has been used many times before, yet we are all thrown into outer space alone in our one-person spaceship when we hear "Your child has...", and "Your child needs..."

Most of us immediately say "Are you sure?" even though we 'know' that this diagnosis is true. We who live with the adorable disabled 'see' what is wrong a long time before any 'expert' does, and most of us stumble over our feet before we stand up to be counted among the Courageous; the Pioneers; the "I dont care what you say I'm getting my child what he/she needs" crowd. We often dont know where the strength and determination comes from, and some of us do give up, crushed by the forces who stand in our way. But somehow many of us steadfastly go after our goals of equal opportunity, freedom from judgement, and welcoming communities for our special children despite horrific abuse and harassment.

No fight can ever be won without a strategy, and no strategy was ever written without information. Alisha Leigh has written a great deal about advocacy, and offers below what parentadvocates believes is a basic first step in any parent's advocacy for his/her child: Writing a Parent's Report.

What is a Parent Report?
Alisha Leigh
alishaleigh93@yahoo.com

LINK

As the parent of a child with a neurological disorder(s) ["special need" - added by parentadvocates], it is your responsibility to assemble an expert team for your child's overall care and education. In our personal journey seeking help for our child, we accumulated reports from various professionals within a relatively short period of time. We were dealing with comorbid conditions. It was startling to discover that there was no "one" professional who could put all the information together, outline a treatment plan, then coordinate and participate in implementing treatments. In retrospect, even if there was such a professional, a major component would be missing; that component being the person who truly "knows" the child -- the parent.

Whether your child has one or more disease or disorder, preparation of a Parent Report can prove beneficial in "pulling it all together." Several other reasons and uses for a Parent Report are listed below.

Memory fades over time. Preparing and continually updating a report helps keep facts and sequence of events in order and "at your finger tips."

A Parent Report can give a professional critical information that may not be conveyed by the parent to the professional due to form limitations or time constraints during an initial appointment.

Preparation of a report presents the opportunity to tender parental views in a logical, calm manner. Walking into a meeting or a doctor's appointment knowing it's probable you're going to get the standard dissertation that the problem is due to "lack of parenting skills" makes it's difficult not to go on the defensive. A Parent Report can help you stay focused, and be used as a tool to redirect attention to pertinent issues. It can also greatly alleviate the "intimidation factor."

Sometimes it happens that what's said during consultation is just as important as what might be found in a formal report. Nevertheless, when "it" is not in the report provided by a professional, the input is not available for other team members. A Parent Report can keep all the team players informed of your child's status in various areas, i.e., medication adjustments, progression of occupational therapy, responsiveness to counseling, new behavioral problems, problematic behaviors resolved, etc.

A Parent Report can be utilized as a type of screening tool. Prior to an appointment, I fax or e-mail the report. The overall reception of the report has been instrumental in helping gage the attitude and professionalism of the professional. Thus far, I've been able to reach conclusions to questions that I personally need addressed up front. For instance, did the professional take the time to even scan the report? Is the report taken seriously or dismissed out of hand? Is s/he receptive to input by a parent or is the attitude portrayed that "you're just the parent?" Whether because of lack of expertise, general disrespect, arrogance, or being just too busy to render the quality of care I expect for my child, knowing sooner rather than later that I'm not going to be able to work with a particular person is important.

Such a report is helpful in preparing for an IEP meeting.
Other helpful information pertaining to writing and use of a Parent Report can be found by:

First, reading Parent Report Outline by Jerri:

PARENT REPORT:
WHAT IS IT?

Under the reauthorization of IDEA 97 we are now full MET team members which essentially means squat if we dont take advantage of it.

Ok everyone here has read "their" reports, and you may or may not understand them, and IF you dont you must request to have them explained to you. Ask in writing, better yet put your questions in writing too.

A Parent report is something you write, and you share with the school, and it becomes a permanent part of your childs educational record.

What is the worst thing about this in terms of next grade, new teacher, new school, new Doctor, new counselor, babysitter, probation officer,Judge etc... etc...????????????

ITS TELLING " THE STORY " AGAIN...........
( DO IT ONCE DO IT WRITE ) THEN UPDATE, UPDATE, UPDATE!

Ok, heres the outline, and you make however you want, but you need to understand that the better you " build " this the easier it is to get your point across, and ANYONE who will ever be involved in Advocacy for your child will find this a crucial peice.

IE: If you identified a need for your GFG to learn to tie his shoes, and it was ignored by the MET team, and he trips and falls, then you have a sound position for Liability.
(very simplistic example and I AM NOT saying you should be looking around every corner for a lawsuit... it just shows that you properly shared your concern )

WHAT IT DOES IS PROVIDE FOCUS... A ROADMAP, AND A GUIDE TO YOUR CHILD, ALBEIT THE TWILIGHT ZONE!!!

Cover:

Parent Report and assessment for GFg 12-15-98

Prepared with love by:

Mr. & Mrs. GFG

* scan a pic for cover if you like... keep the focus on the GFG!!!!

1. Intro to GFG
* describe what your child looks like who he is, what he likes favorite cereal, toys & activities. general positive overveiw of your child. By all means use humor here...

ex: favorite hobby... driving parents nuts etc.

* try to make it humorous as it will entice reader to read on.

2. INTRO TO PARENTS AND HOME

* who he lives with, and what you're like, your jobs, interests etc. Sibs, pets, extended family supports. Walk them thru your home, when I did mine, I introduced each family member, then at the end described GFG'S relationship with that person.

If you have concerns about your home, bring them up only slightly here. Your values... this is good place to include your values, church, community involvement volunteer work etc.

GFG'S room, describe that, and who sleeps in there, and if he is alone cause he has to be, breifly explain why he has to be alone.

In describing sibs, I told about their awards, grades, challenges, etc.
Pets... this is good time to bring up concerns about the way GFG has treated pets.

3. MEDICAL HISTORY

* PREGNANCY/ADOPTION/BIRTH/TODDLER/any and all concerns. CHIX POX, infections stitches, broken bones, a chronological, go straight to meds who prescribed / how much.

4. SOCIAL HISTORY

* Ok you may get squeemish here, I really dont like talking about my divorce, whom I lived with etc. But they will ask, and this is your chance to present it in the light in which you veiwed it, without their judgemental interpretations.

Many times they twist what you tell them in their reports to insinuate that the problems are in the home. So be honest, and tell them how you resolved any negative experiences.

Talk about how your child developed socially, was he eager to play with other toddlers, how does he do with neighbor kids, at church, at school etc. ( Matt cant name any classmates.. and has never been invited to a friends home) sigh.........

5. WHATS WORKED / WHATS FAILED

* When my GFG does this we have done this... this worked / this didnt. This is what works now! In second grade his teacher was like this, and he responded well to this. In third grade the teacher did this and it was a disaster. We used a point system for chores, and it failed because. We tried Dr. Greens method in dealing with________ and it worked great the first 3 times.

If you are absolutely baffled by a particular behavior, be sure you discuss it and explain that you have no idea how to address it.

6. MAJOR CONCERNS

Today / tommorow / next week /year 5& 10 years from now.

( I started this section with " Well serial killer comes to mind..." )LOL

* I am concerned that my GFG will not receive an appropriate education this year because....

I am concerned that he will be in jail because...

By not providing him an appropriate education he will be affected next year...
in 5 years.......
in 10 years......
in Life.......

7. STRENGTHS AND WEAKNESS'S

* In the home........
At school...............
In church.............
In the community.........
GFG with himself.............

I listed 3 examples in each except home & school, this is where I really went into detail about the two. And as you may guess the weakness's were longer in the home/school stting than strengths, I was not concerned however cause it is an accurate veiw.

8. RESOURCES FOUND/TRIED/FAILED

* These are the things you have found, tried or wish to try and why, and want the district to consider in providing FAPE. Medcial services, residential, summer wilderness camps, one on one aide.

Vocational programs, physical therapy etc.
Alternatives to restraints, Bio feedback, music therapy, art therapy.
If your GFG does not have freinds, ask for a summer camp ( Over night ) to expose him to positive peer relationships.

If he gets kicked off the bus all the time, ask for a 1 on 1 aide.

NOTE: if your pc is suffering as a result of all thats happening, ask for parent training and counseling, ask that you and your entire family be trained in preventing / deflecting assaults. Also sensitivity/disabilty awareness training for family/friends/neighbors/ dog!!!( kiddin about the dog, but they should get respite too.)

IDEA 97 OPENS MANY DOORS, YOU JUST HAVE TO KNOW HOW TO ASK...!

9. BEST WAYS TO COMMUNICATE

* this is where you tell the school how you wish to be contacted, how you can best work together, such as conveinent times and locations for meetings, phone calls etc.

*** IF YOU ARE GEETING IN TROUBLE FOR CALLS AT WORK, FORBID THEM TO CALL YOU THERE, AND CREATE AN ALTERNATE PLAN!!!*******

Some districts provide extra books for home, and FAX machines, to parents so that reports and homework can be sent quickly. Fax machines are an excellent way to communicate.

10. DREAMS AND GOALS

* Allow yourself to sit back and dream of the life you want with and for your GFG, soccer, ballett, singer, spelling bee champ, college, marriage, career, cheerleader, 1st date, Prom, astronaut and parent.

How you would like your GFG to experience life.

DONT

DO NOT SIT DOWN AND DO THIS IN ONE SITTING!!!

START IT... DO THE OUTLINE... SAVE IT.

COME BACK AND DO IT SOME MORE.

THE MEDICAL PART IS THE MOST TECHNICAL.

As things change update the report, and show the updates.

Send your report to the school and ask for a new IEP or MET, ask that they read it in advance, if thats whats in order.

Next send a copy to the other providers, such as Dr. , counselor, PO, whoever.

Be very proud of yourself for having done such a neat thing for your child.

Well... hope you all will find this as helpful a tool as I have. Really validates your GFG and your family.

Hugs N Love!!!

Jerri

Second, read Write a Portrait of Your Child
Preparing for the IEP Meeting
by Judy Bonnel

LINK

To be an effective advocate for your child you must learn how to be on an equal footing in IEP meetings. You must be able to articulate your concerns and thoughts, which means careful preparation. Such preparation, while time consuming, will pay off handsomely. Preparation will give you a head start on getting your concerns and recommendations documented and considered by the other IEP team members.

The written record of the meeting is what counts if there is ever a dispute about what was said or what happened during an IEP meeting. While the district takes the official minutes, you as the parent are entitled to have your input included in the record. The best way to ensure your concerns and recommendations are in the record are to take them to the meeting in writing. You can then ask to read it out loud and request it be included with the minutes as part of your parent input to the meeting. The following strategies can assist you in accomplishing this task.

Both the U.S. Department of Education and a State Department of Education have told me of a new way to write a present level of performance that describes the whole child, his strengths, weaknesses, and needs. Rather than one PLOP here and one there, this new approach can offer a total picture of the whole child. Parents can adopt this technique, thus helping the team see their child in a new way.
Through experimentation, trial and error, I refined this idea and developed the "Portrait" as a way for parents to present crucial information to the IEP in a concise, thoughtful manner. Only we "write" the portrait, rather than "paint" the portrait. By writing a "portrait", you can see that no strengths, weaknesses, or needs, as you know them, are overlooked by the team. While the team will write the official present levels of performance, such input from a parent is very powerful. IDEA recognizes that parents have unique knowledge of their child, knowledge that is crucial to successful planning of placement and services.

It has been gratifying to have positive feedback from administrators on parents using this approach to present parent input for an IEP meeting. They have expressed their appreciation to parents for presenting such a concise, informative document that spells out their concerns and unique insight on their child.

Writing "A Portrait"
Writing what amounts to a portrait of your child is a powerful tool for parents to use. Such a document can help keep the team directed towards your child's strengths, weaknesses, and educational needs. It is important to get your child front and center quickly at an IEP meeting. By reading your "Portrait" at the very beginning of the meeting you will immediately see the focus shift to its appropriate place, the needs of your child.

Benefits for both parents and the district

Such parent documentation can help keep districts in compliance with the law, since all information, including parent input, is to be carefully considered. Since parents are equal participants, a written record of parent input can clarify issues and concerns, and reduce the level of confusion sometimes present at a meeting. Parents can request that this document becomes part of their official parent input to the meeting by making that request in writing, at the end of their "Portrait". Districts have been very cooperative in this effort to see that parent input is treated as equal in importance to district minutes.

As a parent, I know how very difficult it can be to tie down your parental concerns to specifics. But as you go through this exercise you may find your vision of your child and his or her needs come into sharper focus. You may be surprised at how much you learn about your child as you create your portrait. You will better prepared at the meeting to ask those all important questions regarding how your child's needs will be met. Your knowledge of his or her strengths, weaknesses, likes, dislikes, fears, and dreams, is unique and very necessary to the total picture of the child.

Step One: Document all of your child's needs in writing

Since the team is required to address all of the child's needs, it is necessary to assemble all of the pertinent information you have, including the last multi disciplinary evaluation, any medical or therapist's evaluations, information from good articles or books that pertain to your child's disability and possible needs, and your own invaluable knowledge of the needs. As you thumb through all this information, pick out all the needs you think are pertinent at this time. Write down each one as you find it. Since this is detailed work, it is best to do this exercise before you write your portrait. Think of it as assembling the essential materials before you start painting. If you try to skip this step, you may get bogged down in the details and "not see the forest for the trees" when it is time to complete the portrait.

Step two: Paint the background

Think of the background of your portrait as would an artist. You want to show the overall colors that will set the scene for the details. For your portrait, you will write a description of your child, his personality and nature, how the disability impacts education and/or social skills, and describe any fears or frustrations. Weave into the background just a few education specifics at this time.

You will likely find it very difficult to accomplish the next step, which is to cut it down to no more than one third of a page! The shorter you make it the greater the impact will be on the team. They are more likely to pay attention. Now you will have to slash and burn, but it will be with purpose. You must choose only the most important facts.

Step Three: Insert your list of needs

This is your opportunity to see that the team considers each and every need documented in all your reports, evaluations, research, and personal observations. This is where you go into great detail. Do not worry about the length of the list. Do not worry about whether everyone will pay attention throughout your reading of this portion. The important thing is to get it into the written record of the meeting for consideration. Number each need. By numbering each need each team member, including you, can track what needs have been addressed and what ones have not been addressed. You have a quick reference tool, in writing.

Parents often find reading read articles and books on the relevant disability or disabilities helpful when assembling this list of needs. Such a book or article can put into words what we as parents often know but have difficulty putting into words. After all, we are not professionals. As you read pick out those things that make you think "That's Johnny!" and "Yep,that is him!" or "It is like they wrote the book about Johnny!" Of course not everything will apply, as no two children are alike. Parents must be very careful to select only those characteristics that really describe their child. This exercise can help add the appropriate details onto your portrait canvas.

Step Four: Summing it up

It is important to end the portrait on a positive note. This is a great place to write a brief description of your child's dreams for the future, what he or she wants to become, whether the child wants to go to college, live independently, etc. Include your dream for your child as well. Again, keep this paragraph very brief if you want to keep the team's attention. Often parents want to include a statement that they want to see their child become a successful, adult with a career, and able to live independently.

Points to remember

Be sure to take enough copies for everyone on the team to have their own copy.
Keep yourself on task by reading the entire Portrait uninterrupted.

Write on the document that you wish the Portrait to become part of the written record, as it is part of your parent input to the meeting.

Do not list any recommendations in this document. The portrait is simply your assessment of present levels of performance.

Write a second document of Recommendations for Team Consideration and present it when the team reaches the point of considering what services and placement are needed. (Trying to mix the two into one document dilutes the effectiveness of both.)

Remember to take plenty of copies so each person can follow along and digest the information as you read it out loud.

SAMPLE PARENT REPORT

Concerning Stephen

January 21, 2002
LINK

Prepared for Ms. Janet Woods
Principal, Barnett Elementary
Anywhere, USA

In Conjunction with the ARD meeting scheduled
For January 25, 2002 at 10:45 a.m.

Prepared by:
Alisha Leigh
Title Page
Table of Contents

Introduction to Stephen 3

Stephen's Home, Parents, Siblings, and Extended Family 5

Medical and Mental Health History 7

Social History 12

Behavior Wise -- What's Worked/What's Failed? 13

Major Concerns 17

Strengths and Weaknesses Summary 18

Parent Questions, Comments and Summary 20

Attachment "A" -- Memo to Ms. Katherine Todd, January 16, 2002
Subject: Stephen Leigh - Behavior/Discipline (Not published)

Attachment "B" -- Memo to Ms. Lynda Adams, Diagnostician, January 10, 2002
Subject: Pre-ARD meeting (Not published)

Click here to go to the Parent Report on Stephen

Click here for the Student's Portfolio: Kim