The Colorado Advisory Network

Helping Children with Special Needs

Parentline

Educational Advocacy for the Child with Autism and Other Disorders

by Mary Anne Fleury, M.A.

ad*vo*cate n. 1. a person who pleads another�s cause.

ad*vo*ca*cy n., the act of advocating, or speaking or writing in support of something.

Many different words enter one�s mind when they hear advocacy. Recently, many of those words are negative. For years I called myself an �advisor�, as I didn�t want to be seen in an adversarial light. Why was I so afraid of being called an advocate? I believe it�s because over time many advocates have become very aggressive in their dealings with the schools (some rightly so) and the schools in return have become defensive. So now, it�s time to bridge the gap between parents, advocates and schools to meet the needs of the ones we hold so dear. Communication and knowledge are the keys in bridging the gap, and the keys to unlocking the existing problems.

Within this article I will try to explain the special education process, although I realize many of you have already been in this process for years. I will also give advice as to when it is a good time to get help for your situation, who to get help from, and what to look for in a good advocate.

As many of you are familiar with, the special education process begins with identification of needs. We are supposedly in a needs-based programming era, therefore, it behooves us all to remember that we meet and communicate as a team to determine a child�s individual needs. I can never stress enough that a child�s needs must direct programming, not vice versa. We often get caught in the web of what things used to be like, making it very difficult to be creative in programming. For example, if the programming at the school strictly dictates a full inclusion model (or total mainstreaming), we often get stuck in thinking of ways to make the regular classroom fit all of our child�s needs. Having taught in a school with a full inclusive environment, I found it necessary to redesign available services to meet all of my students� needs. For some children, it was important to use a �pull-out� model versus the �full inclusive� model to meet individual needs, while maintaining a majority of the day in an inclusive setting. This is just one example. Your child�s needs may be a combination of different environments. It is important that the learning environment truly reflect your child�s needs.

The IEP, or Individualized Educational Plan, is very detailed and is a plan that reflects what your child will receive in special education. The following are a few important points to remember about the IEP process:

~After 45 school days, an initial staffing, or IEP meeting (both terms used interchangeably) needs to take place. The 45 days begins after the initial �consent to test� form has been signed by the parent. A full evaluation includes testing in the these areas: cognitive, academic, speech/language, occupational and/or physical therapy. A health evaluation will also be completed, as well as a report by the school social worker. Note: A typical full evaluation performed in the public school setting does not normally include evaluations by the occupational or physical therapist. For a child with autism, it is imperative that the school provide these evaluations. You have the right to request these evaluations if they are not offered to you. These reports, as well as the speech and language evaluation will reveal the degree of deficits in leisure/play activities and motor skills, as well as deficits in social interaction and communication.

~You are an important part of that staffing, as you are a member of the team. � Have documentation of what you feel your child�s needs are ready to present.

~At the IEP meeting, you will need to sign a paper that says you were in attendance. �After the meeting is over, you will be asked to sign approval for placement if your child qualifies for special education. �You do not need to sign this form immediately, but can take it home and return it within 10 days. �Many parents want to review the information and ask for someone else's opinion, which is perfectly OK- this is your right. �Do not feel intimidated to sign this form.

~At the end of the meeting, you should receive a copy of the complete IEP. �Often, a school will not write the goals and objectives pages at that meeting, as this may take another 30 minutes or so. �This is okay, as long as you approve this and as long as you receive those pages within a reasonable time frame. �If you feel uncomfortable about waiting for the goals and objectives, stay and write them together at the meeting. �This is also your right to have these completed at that meeting. The IEP is composed of the following pages:

~ A page that shows your child's strengths and concerns in the following areas: �social/emotional, academic, physical/motor, communicative, and cognitive. �Transition skills should also be included for students with moderate to severe disabilities.

~Pages reporting all documentation of all assessments given to complete the IEP. �For a full evaluation, these areas need to have assessment documentation: �Cognitive, Communicative, Educational. �A Social/Emotional write-up needs to be included as well. �For initial and triennial (3 year) reviews, a health summary needs to be completed also. �Any other assessment data can be included such as Occupational Therapy for students showing severe motor delays.

~A Statement of Educational Needs and Characteristics of �Service page needs to be filled out at the IEP meeting. �This is written together as a team (remember, you are a part of that team). On this page the student's needs in all areas are written, and they are prioritized showing the most important need to the least. �From this page the Goals and Objectives are written. �This page determines what the special education team will be working on with the student.

~A page that determines the disability, if any should be completed at the meeting. �This page is called the "Determination of Disability" page. �This page consists of the definition of the specific handicap which the child exhibits, and the criteria to qualify for that disability. �This page also determines whether or not enough testing has been completed to determine whether the student has a disability or not, and whether the student can receive reasonable benefit from regular education alone.

~Goals and Objectives pages should be completed for each area of concern. �If a student shows deficits in Math and Reading, there should be a goal for each area and objectives written under each goal. �Each objective needs to have a measurement base to determine where the student is functioning. �Each objective also needs to have a percentage or other measurement base to determine what s/he is expected to accomplish within a year. �The criteria and evaluation procedures (how they will determine if the student has met that objective) are also written onto this page.

~A page showing what services are to be provided, who will provide the services, and how much time the student will spend receiving these services needs to be filled out completely. �Take note: �there are different ways of providing service: �Indirect/consult, Direct in General Classroom, and Direct Outside General Classroom.

Indirect/Consult: �This basically means that the provider will not work directly with the student, but will only consult with the general education teacher as to ways to help the student succeed.

Direct in General Classroom: �This would provide services within an Inclusion model. �The student remains within the general education classroom, and the special education teacher provides services within that class. This can be done in the form of a small group, one-on-one at the student's desk, or in a larger group setting.

Direct Outside General Classroom: This is typically viewed as the old "pullout" method. The services are provided under this service model outside the regular classroom in a special education work room, lab, etc. The services are again provided by the special education teacher.

~A Recommended Placement in the Least Restrictive Environment page is also included within the IEP. �This shows what placements have been considered and what placement has been selected.

~Finally, the page that gives parent permission for placement is the last part of the IEP process. �This is the page that parents sign to give consent for their child to be placed in special education. �If the parents do not agree to the placement, they do not have to sign. �Many states will not begin services unless parents sign this page, however, this seems to be in conflict with IDEA (Individuals with Disabilities Education Act). �Under IDEA, if a school district finds that a student qualifies for special education services, they can begin services without parent permission. �If a parent disputes the placement, it is the parents responsibility to begin Due Process to remove their child from special education. �Under the law, school districts are required to provide a Free and Appropriate Public Education (FAPE) for every student. �If a student's appropriate education is found to be within the realm of special education, the district has to provide these services.

After this page is signed, services begin immediately. �Within one year, a review of the student's IEP will take place. �This is often called an Annual Review. �At the Annual Review, goals and objectives are reviewed and rewritten for the following year. Testing does not typically happen at this time.

After three years, a Triennial Review will take place. �This involves complete testing to determine proper placement for the student once again. �If parents wish to have their child retested before the Triennial Review, they may do so provided one year has passed since the previous testing.

Okay, so you know the IEP process and your plan is in place, but things are not working.

When is the best time to get help?

• Multiple meetings with the school prove to be unsuccessful in your child�s learning process.
• The IEP does not reflect your child�s true needs, and the school team is hesitant to make appropriate changes.
• Terminology and fast-paced meetings are too confusing.
• To verbalize your concerns to professionals outside the school.
• To discuss your options within the public school setting.
• When your �gut feeling� tells you to do so.

It is never the wrong time to get advice.More information is better than not enough information.

Who can I get advice from?

• Other parents who have children in special programs.
• Other teachers who see your child often.
• Professionals such as your doctor, psychologist, therapist, lawyer, parent advocate, support group leaders, etc.
• Organizations such as the Autism Society, The Colorado Advisory Network, The Legal Center of Denver, ARC of Colorado, among others.
• Many websites, such as: www.autismcolorado.org/asacchome.htm, www.coloradoadvisory.org., www.thearcofco.org. Use your search engines to find more.

Interview your advocate before you begin! Ask these questions:

• What is your background, and how long have you been advocating for children with special needs?
• Will you be able to reason my case objectively, and can I count on you to speak up and voice my concerns at a school meeting?
• How do you handle confrontational situations with the schools?
• Will you speak up during the meeting when appropriate?
• Will you take the time to review all of my child�s paperwork before the meeting with the school? An advocate should never walk into a meeting �cold�, meaning, without any prior information.
• Will you be honest with me and tell me if I am being realistic in my demands?
• What do you know about my child�s particular disability?
• How much do you charge, and are there any hidden costs I should know about? (travel time, phone time, etc.)

What makes a good advocate?

• A good advocate will help slow the process towards litigation, but will be able to determine when is the best time to file for a due process hearing.
• An advocate should have extensive knowledge of how special education works in the public schools.
• A good advocate will review your paperwork thoroughly, make recommendations, ask you what you would like to see the schools do for your child, etc.
• A good advocate will follow your case through with you at your request. S/he will not leave you �high and dry�, but will work with the schools in finding accommodating meeting times, will make necessary calls to administrators, help write important components of the IEP.
• Your advocate should know the law and the paperwork involved in attaining FAPE (Free and Appropriate Education) for your child.
• An advocate should not be afraid to speak up during the meeting, interrupting when necessary.
• Your advocate should be bold enough to curtail a meeting that is not successful and reschedule the meeting for another time.
• A good advocate should be wise enough to know when a situation is above his/her level of expertise and call in other professionals who can help.
• A good advocate should be kind and tactful, using knowledge and the system to obtain appropriate services. S/he must �dance the dance�, and �talk the talk� in order to have a successful outcome. The advocate should not be belligerent, mean or rude in any meeting, but should be able to handle confrontation in a professional manner.

It�s important to have someone who will hear your story, sympathize with you and work for what is best for your child. A good advocate will do that. But more importantly, a good advocate will be able to determine reasonable demands and understand the process of working within the system to meet the needs of your child. A good advocate will put aside personal feelings and past family experiences and be able to look at each case individually.

Advocates may cost money, but usually are much less than hiring an attorney. Assess costs up front to avoid �sticker shock� later on. If you like the advocate, the benefit may outweigh the cost. There are some organizations that provide free advocacy, but again, it is important to use the interview process to determine if that advocate is right for you.

The above information is in no way complete, and each child�s case is different. The most important piece of information I can impart to you is that you look at your own individual child�s needs. Help your school and advocate see your child through your eyes, with your love. The passion you have to help your own child can spread to others and truly make a difference not just for your child, but for many more children in the years to come.

Mary Anne Fleury is the Executive Director for The Colorado Advisory Network, a non-profit organization whose mission is to bring understanding and partnership into the educational process for the child with special needs. Mary Anne was a special educator for many years in the public school system and is currently an advocate with her organization.

Licensed Psychologist

Child, Adolescent and Family Therapy

Psychological Testing and AD/HD Assessment