Your Child's IEP: Practical & Legal Guidance / Gene ID'd: Spinal Cord Injuries

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Your Child's IEP: Practical & Legal Guidance / Gene ID'd: Spinal Cord

Injuries: 'Superman' to be Cured?

Thursday, January 27, 2000

[This guide is written by Pamela Darr , M.A., M.S.W. Licensed

Clinical Social Worker and W. D. , Esq. And is found through

their Special Ed Advocate newsletter. The s claim that there have

been 6,000 hits to this information in the last few days. The first few

pages of the introduction are reproduced here. For the full document, go to

http://www.wrightslaw.com/advoc/articles/iep_guidance.html#Introduction ]

I. INTRODUCTION

II. WHAT SHOULD BE IN MY CHILD'S IEP?

III. LAW AND REGULATIONS

IV. PRACTICAL GUIDANCE FOR PARENTS

INTRODUCTION

If you are like many parents, when you receive a telephone call or

letter inviting you to an IEP meeting, you respond with anxiety. Few parents

look forward to attending IEP meetings. You may feel anxious, confused and

inadequate at school meetings. What is your role? What do you have to offer?

What should you do? Say? Not do?

Because they are not educators, most parents don't understand that

they have a unique role to play in the IEP process.

Parents are the experts on their child.

Think about it. You spend hours every week in the company of your

child. You make casual observations about your child in hundreds of

different situations. You are emotionally connected to and attuned to your

child. You notice small but important changes in your child's behavior and

emotions that may be overlooked by others. You have very specialized

knowledge about your child. This also helps to explain why your perspective

about your child may be quite different from that of the educators who only

observe your child in the school setting.

Why do parents feel so anxious, inadequate and intimidated in school

meetings? Most parents seem to believe that because they are not " trained

educators " -and don't speak " education jargon " -they have little of value to

contribute to discussions about their child's education.

The " Parental Role "

Perhaps we can explain " parental role " more clearly if we change the

facts to illustrate our point.

Think back to the last time your child was sick and you saw a doctor

for medical treatment. You provided the doctor or nurse with information

about the child's symptoms and general health. They asked you for your

observations-because you are more familiar with your child.

Good health care providers elicit this kind of information from

parents. They do not assume that unless parents have medical training, they

have little of value to offer! When health care professionals diagnose and

treat children, they gather information from different sources. Observations

of the child are an important source of information. The doctor's own

medical observations and lab tests are added to the information you provide

from your own personal observations.

Do you need to be medically trained before you have any valid or

important information to offer the doctor about your child's health? Of

course not.

Decision-Making: Medical v. Educational

To diagnose a child's problem and develop a good treatment plan,

doctors need more than subjective observations. Regardless of their skill

and experience, in most cases doctors need objective information about the

child. Information from diagnostic tests provides them with objective

information. When medical specialists confront a problem, they gather

information-information from observations by themselves and others and from

objective testing.

Special education decision-making is similar to medical

decision-making. The principles are the same. Sound educational

decision-making includes observations by people who know the child well and

objective information from various tests and assessments.

In both medical and educational situations, a child is having problems

that must be correctly identified. The Individualized Education Plan (IEP)

is similar to a medical treatment plan. The IEP includes information about

the child's present levels of performance on various tests and measures. The

IEP also includes information about goals and objectives for the child,

specifically how educational problems will be addressed. The IEP should also

include ways for parents and educators to measure the child's progress

toward the goals and objectives.

How to Evaluate Progress

Now, think back to that last time your child was sick and needed

medical attention. You left the doctor's office with some sort of plan-and

an appointment to return for a follow-up visit. When you returned for the

follow-up visit, you were asked more questions about how your child was

doing-again, you were asked about your observations. This information helped

the doctor decide whether or not your child was responding appropriately to

treatment. If you advised that your child was not responding to the

treatment and continued to have problems, then the doctor knew that more

diagnostic work was needed and that the treatment plan may need to be

changed.

Special education situations are similar to medical situations -

except that these decisions are made by a group of people called the IEP

Team or IEP Committee. As the parent, you are a member of the IEP team.

Before the IEP Team can develop an appropriate plan (IEP) for your child,

the child's problems must be accurately identified and described.

To make an accurate diagnosis, the IEP team will need to gather

information from many sources. This information will include subjective

observations of the child in various environments - including the home

environment and the classroom. The information should also include objective

testing. Objective testing needs to be done to measure the extent of the

child's problems and provide benchmarks to measure progress or lack of

progress over time.

If your child receives special education services, you know that a new

educational plan or IEP must be developed for your child at least once a

year. Why is this?

Children grow and change rapidly. Their educational needs also change

rapidly. In many cases, the IEP needs to be revised more often than once a

year. Parents and educators can ask for a meeting to revise the IEP more

often than once a year-and new IEPs can be developed as often as necessary.

The child's educational plan, i.e. the IEP, should always include

information from objective testing and information provided by

people-including the parents and teachers-who observe the child frequently.

WHAT SHOULD BE IN MY CHILD'S IEP?

The IEP should accurately describe your child's learning problems and

how these problems are going to be dealt with.

Present Levels of Educational Performance

One of the best and clearest ways to describe your child's unique

problems is to include information from the evaluations. The IEP document

should contain a statement of the child's present levels of educational

performance. If your child has reading problems, the IEP should include

reading subtest scores. If your child has problems in math calculation, the

IEP should include the math calculation subtest scores. To help you

understand what these scores mean, you should read our article

" Understanding Tests and Measurements. "

Goals and Objectives

The IEP should also include a statement of measurable annual goals,

including benchmarks and short- term objectives. The goals and objectives

should be related to your child's needs that result from the disability and

should enable your child to be involved in and progress in the general

curriculum. The goals and objectives should meet other educational needs tha

t result from your child's disability.

The IEP goals should focus on reducing or eliminating the child's

problems. The short term objectives should provide you and the teacher with

ways to measure educational progress. Are reading decoding skills being

mastered? How do you know this? An IEP should include ways for you and the

teacher to objectively measure your child's progress or lack of progress

(regression) in the special education program.

In our work, we see many IEPs that are not appropriate. These IEPs do

not include goals and objectives that are relevant to the child's

educational problems. In one of our cases, the IEP for a dyslexic child with

severe problems in reading and writing, included goals to improve his

" higher level thinking skills, " his " map reading skills " and his

" assertiveness " -but no goals to improve his reading and written language

skills. This is a common problem-IEP goals that sound good but don't address

the child's real problems in reading, writing or arithmetic.

If you take your child to the doctor for a bad cough, you want the

cough treated. You won't have much confidence in a doctor who ignores the

cough-and gives you a prescription for ulcer medicine!

* * *

Gene ID'd In Spinal Cord Injuries: 'Superman' to be Cured?

[From the Associated Press.

http://www.intelihealth.com/IH/ihtIH/EMIHC000/333/333/266325.html ]

Scientists have identified a gene that prevents the brain and spinal

cord from rewiring themselves after an injury, pointing the way to new

treatments that might someday help paralyzed " Superman " star

Reeve and 250,000 Americans like him.

Dubbed " Nogo " because of its inhibiting effect, the gene produces a

protein that prevents nerve-cell connections in the central nervous system

from regenerating after they are cut. Experiments in rats showed that when

the protein is blocked, the spinal cord can repair itself.

Neurologists hailed the work as a landmark step. But they cautioned

that other factors may also inhibit nerve regrowth.

" It is important not to give patients false hope, " said Dr. Ben

Barres, a professor of neurology at Stanford University. " But I think there

are a lot of grounds for optimism now. "

The findings were reported in Thursday's issue of the journal Nature

by scientists in Switzerland, England and the United States.

If the scientists are right, they have solved an old mystery: Why

can't connections in the central nervous system - the brain and spinal

cord - repair themselves, when connections in the peripheral nervous

system - everything else - can?

The answer is that the Nogo protein is present in the central nervous

system but not in the other nerves. Nogo may exist to hardwire the brain and

spinal cord - or fix them in place - after they have developed, and prevent

them from going wild.

A team led by Schwab of the Brain Research Institute at the

University of Zurich in Switzerland has been working on Nogo for 15 years,

and created an antibody that blocks the Nogo-created protein.

In test-tube experiments, nerves dissected from rats were exposed to

the antibody. The nerves regrew several hundred nerve connections known as

axons, or the tiny branches that transmit impulses from one nerve cell to

the next, Schwab reported.

In an additional set of experiments that were not published in Nature,

Schwab's team said it partially cut the spinal cords of rats, paralyzing the

animals, then gave the rodents the antibody for two weeks. The nerves

regrew, and the animals resumed normal activities such as grabbing food

pellets and climbing a rope.

" We see these animals' recovery functionally, " said Isabel Klusman, a

medical biologist who works with Schwab.

Researchers said the Nogo research may lead to a three-pronged therapy

involving a Nogo blocker, some agent to boost nerve growth, and some kind of

cell transplant.

Schwab's team never identified the actual gene. That was done by two

separate teams, one at the pharmaceutical company Kline Beecham in

England, the other led by Dr. Strittmatter at Yale University.

Some 11,000 people injure their spinal cords each year, primarily in

car wrecks, as football star Derrick did last Sunday. Reeve has been

paralyzed from the neck down, using a respirator to help him breathe, since

a 1995 fall from a horse.

Researchers are more cautious than Reeve, but the actor, whose

foundation helped finance some of the Nogo research at Yale, said the

discoveries are part of a growing body of advances that he believes will

allow him to walk again someday.

Reeve said he hopes to take part in human tests by Schwab in about

five years, once work has progressed to the point he would feel safe.

" It will be a question of money and time, " Reeve said from his office

in Bedford, N.Y. " But the field now is very alive and there is suddenly a

lot of progress being made. "

Copyright 2000 The Associated Press. All rights reserved.

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editor: Lenny Schafer schafer@...

eastern editor: , PhD

newswire culls: Ron Sleith RSleith@... | * Not FEAT

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