Getting Ready for Advocacy

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By Lynne Arnold

For the first couple years of my son’s autism diagnosis at 3 years old, nothing was more confusing for me than how to navigate the world of special education.

I had put my son on a special diet, studied complex medical interventions and even overcame my fear of giving my son an MB-12 injection. I was super mom when it came down to what I could do personally for my son.

But despite endless telephone calls, I wasn’t successful in getting anyone to take comparable action for my son at my local school district or regional center (California’s state agency for developmental disabilities). It was like banging my head against a brick wall.

It took me nine months just to get an IEP (individual education plan) meeting. Then I was totally clueless. The IEP form had already been filled out. The school psychologist had never met my son; but he and other staff who didn’t attend the meeting had already signed the IEP. The meeting was simply myself, the county representative and a speech pathologist. It was all totally out of compliance with all applicable state and federal laws. But what did I know?

Obviously, not much. My son lost out on three years of early intervention from our regional center and school district because I didn’t understand that both state and federal laws mandated that my son was ENTITLED to appropriate and evidence-based behavioral and educational services.

Why did this happen? Besides the regional center’s and school district’s refusal to fulfill their legal obligation to my son, I didn’t understand the first thing about advocacy. Moreover, I couldn’t conceive of how to overcome the huge gulf between the seemingly zero availability of autism services or resources in my rural farming community and achieving a free appropriate public education (FAPE) for a child with autism.

But fate intervened. My school district, in conjunction with the county office of education, filed against me because I had refused to sign their latest IEP offer.

Cornered by the situation, I reached out to other parents to help me find a special education attorney. Finally, the curtain was lifted on special education law and I began to understand how I could effectively advocate for my son, as well as connect the dots between his educational and behavioral needs with the appropriate services and placement.

With the help of my attorney I learned the law and with many expert professionals in psychology, behavior, speech pathology and occupational therapy, I gained a better understanding of what it would take for my son to communicate, learn and gain greater independence in his life.

Through advocacy, negotiation and yes, teetering on the cusp of a due process hearing, we were able to secure an intensive behavior program through both our regional center and school district. Finally at nearly 6 and a half years old, my son achieved FAPE in a regular education placement with a 1:1 aide which included an in-home ABA program, speech and occupational therapy.

How do you turn around a situation like this? Of course, it certainly helps to have an experienced special education attorney at your side, but in most cases that support is temporary. Becoming an informed parent advocate is the most powerful role that you can assume for your child.

Although you may encounter many specialized professionals in this journey, never forget that nobody knows your child as well as you do, and most importantly, nobody has the same long-term commitment that you do. Only you and your family will feel the life-long ramifications of the decisions made in meetings with your school district or state agency.

Many parents feel overwhelmed in those meetings. There’s so much jargon, paperwork and people who just want you to sign on the dotted line. It’s not surprising that parents often walk out of IEP meetings, asking themselves, “What just happened?”

That’s when it’s time to get back to basics and learn how to prepare to advocate for your child.

Special education is very document intensive. So first,  we need to start with the paperwork. Where is it and what does it mean?

 

Secure the Records

If you haven’t already, it’s absolutely essential to start with requesting a complete copy of your child’s educational records (that’s everything in your child’s school, cumulative and educational files). Simply send a letter (fax or email) to your school contact (principal, special education director, autism specialist, etc.) requesting the file.

In California, the district has five business days to provide the copies (check to see if your state’s education code specifies a timeline for parental access to educational records). Your district may charge you for the copies, but may not charge you for the time to make the copies. I bought a portable scanner (ScanSnap) with a document feeder, which makes it easy for me to take my laptop to the district office to make my own electronic copies.

Besides gaining a complete record of your child’s education, reviewing these documents can be interesting and insightful. It’s not unusual for parents to report finding notes in the file that were never intended for them to ever see. Sometimes it’s painful, but often it can result in leveraging a better program for the child.

Now that you’re loaded with the documents, be sure to organize them chronologically for easy reference. You can put them into file folders, notebooks or store electronically. See the “Getting Organized” article for more information on this.

 

Deconstruct the Problem

Start with making a copy of your child’s most recent IEP. Get out your highlighter and a red pen and mark it up.

Read it word for word and note any phrase or terminology that isn’t perfectly clear. And I don’t just mean jargon.

Here’s an example that a parent sent to me, asking for help in understanding her 2nd grade son’s IEP:

“The Student will be exposed to the general education curriculum in order to develop positive peer interaction, improve social skills, and/or gain academic competence in the curriculum. Student will require accommodations and modifications and will NOT receive a grade for the following classes: all areas.”

It sounds good, huh? But neither the parent nor I know what it really means and how each aspect is implemented. Does “exposure” mean the child will actually be learning state standards for his grade? And since he won’t getting a grade how will we measure that “exposure” or his “academic competence”? But anyway, why isn’t he getting a grade in any class?

This child didn’t have any social skills goals, so how exactly will he be “developing positive peer interaction” or “improve social skills”?

What are those accommodations and modifications and how do they relate to this child’s challenges in academics, peer interaction and social skills?

Go through this same process with all evaluation reports and all documents provided by the district. You are at a disadvantage until you fully understand each component of the IEP and supporting documents.

 

Become a Writer

You cannot protect your child’s rights without ongoing documentation. If you have a comment, question or concern about your child’s education, put it in writing! Since practically everyone has email, use it because it’s usually the easiest form of documentation that documents the date and time sent.

Learn to write a “letter to a stranger.” This is a written communication than anyone can understand without needing any outside context.

Bad Letter Example: Yesterday, I told the teacher that they weren’t in compliance. The aide wasn’t in the classroom and...

Good Letter Example: On Monday, September 20, 2010 I spoke with Mrs. Helena Rodriquez, 4th grade teacher at Wilson Elementary. I told her the district was out of compliance with my son Henry’s 4/21/10 IEP (see attachment) which specifies that he has a 1:1 aide throughout the day. I was concerned because I had visited the classroom on other occasions (Sept. 17 and 18, 2010) and the aide, Ms. Katy Smith, was not present.

Whenever you get a phone call from your state agency or school district, first put them on hold, then grab your notebook and pen to take notes on the conversation. Then follow up with an email confirming your understanding of the conversation along with any action that will be taken and the timeline for doing so. Ask the recipient to contact you immediately if you have misunderstood any aspect of the conversation.

In addition to ongoing documentation, letters should be written anytime that you are citing a concern, requesting a meeting or a change to your child’s program, or reporting a problem. Always be sure to include your expectation of a response and a deadline for doing so. If it’s an emergency, you may be asking for a response within 24 hours. For other matters, it may be appropriate to request a response within five business days.

Regardless of the intent of the letter, always make it polite and professional. If you’re upset, then first write the angry letter first and let it sit for a day before sending. Resist the temptation to fire off correspondence while you’re mad. It can be satisfying, but sometimes can cause long-term problems.

 

Observe the Process as a Bystander

Many parents have spent entire IEP meetings simply trying not to cry or, even, not to hit anyone. Of course, restraint is always a good idea. But for many of us, IEPs for a beloved child is emotionally charged and thus, often not the best way to learn about advocacy.

Learn by going to an IEP meeting with another parent. Go as a notetaker or just hold their hand. You’ll support the other parent and you’ll likely see the IEP process from an entirely different perspective.

 

Document the IEP Meeting

Ideally, you would give the district advance notice that you intend to audio record the IEP meeting. However, your right to audio record an IEP meeting varies by state. Be sure to check your state’s education code.

Always test your audio recorder in advance and bring extra batteries or a power source. Even if your attorney or advocate is recording, consider also recording. Sometimes devices fail.

 

Don’t Go at It Alone

You can bring anyone you wish to an IEP meeting. This can be a family or friend who wants to provide support or professionals (clinic supervisor, speech path, OT, aides, etc.) who have worked with your child.

And don’t forget to tap into your local and state resources. If you’re unclear about laws pertaining to your child’s education or your district’s interpretation of state or federal law, don’t be shy about calling your state’s department of education. However, do keep in mind that any information you share may not be held in confidence.

You can also find your state’s disability rights organization at napas.org. Their attorneys and/or advocates may also be able to answer your questions and provide insight. In some cases, they may also be able to represent your child at IEP meetings or due  process hearings.

For overall infomation about your district, be sure to talk with other parents (similar age and needs/similar schools or in your district):

  1. Go to local support groups to meet parents in your district
  2. Start a support group just for your school district
  3. Join a Yahoo! group for your state or region

 

Independent Assessments

Of course, independent assessments by third-party professionals are highly recommended. Please see the Independent Asssessments article in the “What’s in a Diagnosis” section.

If you have independent reports, be sure to submit them to the district at least a week in advance of an IEP meeting.

 

Scheduling the IEP Meeting

All IEP meetings must be held on a mutually convenient date and time. If you get a IEP notice that doesn’t work for your schedule, respond in writing to decline that date and suggest at least three other dates/times that are convenient for you.

When the meeting date is confirmed be sure to request any evaluation reports or draft goals in advance of the meeting. There is no mandated timeline; many parents request the reports at least five days in advance.

If the district does not provide the reports in advance, you can consider sending a letter advising them that the meeting now must be rescheduled so you’ll have adequate time to review the documents.

On the date of the meeting, be sure to keep your schedule open ended so that you don’t have to end the meeting before the IEP is complete. Nonetheless, don’t be rushed, if you run out of time, another IEP meeting can be convened to finish the IEP.

The meeting notice should list all required members of the IEP team. If any of the team members are not present at the beginning of the IEP meeting, be sure to ask how that problem will be addressed.

For example, if the occupational therapist is not present. Who is qualified to present her report or discuss the child’s present levels of performance? Who will answer your questions about OT? Will another meeting be scheduled to address occupational therapy?

If the district wants to excuse any member of the IEP team, they must get your written permission to do so. If you’re done discussing occupational therapy, for example, it may be okay to dismiss the OT. It’s up to you to determine if that person will be needed later in the meeting to discuss goals, services and placement later in the meeting.

However, throughout the meeting, there must be a district representative who is authorized to make decisions. Remember, an IEP meeting is, by definition, a decision-making process. If nobody is authorized to make a decision or provide an offer of FAPE, the IEP has obviously been pre-determined and it’s a waste of the parent’s time.

 

Ask Questions Like a Child

Too many IEPs are a game of semantics and jargon speak. Since you’ve prepared in advance with your questions, don’t be afraid to ask. Each member of the district’s team has an obligation to explain all aspects of the current or proposed program.

For example, if they are recommending a preschool because it’s “language rich,” let’s ask what that means. Unless it’s a class for hearing-impaired students, wouldn’t all the teachers and aides be talking, singing or otherwise engaging in verbal activities with the children throughout the day in all preschool classes? What specifically defines a “language rich” special education classroom in which most of the children can’t speak? How does that make it more appropriate for your child than a regular education classroom where all the children are speaking and interacting in an age-appropriate manner?

If a team member uses jargon or otherwise gives a generic description of the program, ask for clarification and request examples that illustrate the terms.

 

Policies, Procedures & Laws

Any time that a district representative mentions a policy, procedure or law, they become responsible for providing it to you.

District “policies” are passed by the district’s board of education. Thus, it’s easy enough for staff to provide you the written policy upon request. And of course, in most cases, those policies are posted on the district’s website. Do keep in mind that district policies cannot conflict with state or federal law.

“Procedures” are trickier. This often refers to a common practice by staff at a certain school or even district wide. However, this doesn’t mean there is any legal basis for the “procedure.” Again, ask for a written policy.

If district staff cite a law, ask for it in writing. If you don’t agree with their interpretation, call your state’s department of education or disability rights organization for clarification.

 

Goals & Objectives

Repeat it like a mantra: goals drive services and placement. Do not allow the team to discuss services and placement until the goals have been established.

Be sure that all goals are objective and measurable.

And of course, don’t forget to include any details relating to any special dietary restrictions. Provide a prescription from your doctor and create goals that relate to the child self-enforcing the diet.

 

Ongoing Reporting

The devil is in the details. How will you know how your child is doing at school? Don’t wait until next year’s IEP meeting to find out!

Consider the frequency that would be appropriate for ongoing reporting. This can range from a daily log that comes home each day with the child to a monthly meeting with all staff whom work with your child.

 

The Drop-down Menu

Do not allow the district to constrain your child’s right to an individualized education by citing the limits of their IEP software. Many IEP programs are poorly written by software developers who do not understand special education.

If the IEP software cannot accommodate your child’s individual needs, remember to go retro! The district can print the IEP document, pull out a pen and simply write on the document.

 

Documentation at the Meeting

At the end of the meeting, have the notes read aloud to the entire team. Ask for corrections and additions to the notes if any of your requests are not documented or if any promises of services, accommodations or modifications are not detailed on the services page.

Use the parent comment section if you don’t agree with any aspect of the IEP meeting or offer. You can do so at the  meeting, or later you can write a letter that can be attached as a parent addendum.

You are entitled to a clear, complete copy of the IEP document at the end of the meeting. Don’t leave without it.

 

Signing the IEP

Consider reserving your signature ONLY for the attendance sheet. It’s in your child’s best interests to take the IEP home and carefully review it BEFORE signing. Make an extra copy of it, and again, get out your highlighter and red pen to mark it up.

It’s a good idea to show the IEP to others who were not at the IEP. This is important because sometiimes parents are relying on their memory of what was discussed at the IEP rather than what is actually detailed in the document.

You may want to listen to your recording of the meeting before signing consent to be sure that all services, placements and goals are stipulated in the IEP document.

If any section is unclear or blank, consider writing a letter asking for clarification. Or if any of the notes are inaccurate, you can write a follow-up letter requesting correction of the notes.

You have four choices when signing:

  1. Consent to the whole IEP
  2. Partial consent, specifying which part(s).
  3. No consent

There is no mandated timeline for a parent to return a signed IEP. However, services cannot begin until you provide written consent.

But, NO services or placement may be terminated or reduced without your written consent. If you do not agree to the district’s offer, their only alternative is to file for due process.

 

Used Car Salesmanship

Do not succumb to the pressure of signing the IEP with assurance that, “You can always call another IEP meeting.” If it were that easy, we wouldn’t need special education attorneys.

Although it’s certainly true that you can call another IEP meeting, that doesn’t mean that the services or placement will be restored to the previous stay put.

 

You’re Ready!

As the parent, you are already the most important member of the IEP team. If you follow the basics of preparing to advocate, you will also be the most empowered member of the team. Congratulations!