18 ways to advocate for your child with learning disabilities
Monday, June 08, 2015
With summer vacation here, scores of IEPs are in disrepair. And many parents feel bewildered. They know they must advocate for their children, but don't know what to do and how to do it. Consequently, many act in self-defeating ways, inadvertently undermining their children's education.
One self-defeating pattern involves outbursts of anger and disdain for their school's IEP team members. Another is failure to read and study important materials, and to fully listen to and accurately understand what school personnel mean instead of precipitously debating them.
Some, feeling hopeless and defeated, fall prey to meekness, agreeing to whatever the school offers. These and other self-defeating patterns arise almost inevitably from feelings of fear, frustration and powerlessness, powerful offspring of the four nots:
- Not understanding the IEP process
- Not preparing adequately for IEP meetings
- Not learning enough about their state and the federal special education laws and regulations (see resources below)
- Not understanding that legitimate needs entitle them to two or more IEP meetings
The IEP: Much more than a 1-hour meeting
If you're a parent (or teacher) who feels unprepared for your child's IEP meeting, you can still take advantage of the IEP process — which, to the surprise of many parents, uses the summer to complete and improve the IEP.
Keep in mind that you, as your child's parent (who has not legally lost the right to represent your child) are entitled to as many IEP meetings as needed to develop an IEP that offers your child a Free Appropriate Public Education (FAPE). Meetings, at agreed upon times and places over the summer, are not excluded (IDEA Sec. 300.323).
And if an appropriate IEP is not in place for the start of school, schools are not allowed to delay meetings for insufficient reasons, such as "We don't hold IEP meetings over the summer." So, if you're not wasting the school's time and resources — which are precious — consider requesting an IEP at a mutually-agreed-upon time and place, even over the summer (IDEA Sec. 300.322).
As a full-fledged member of your child's IEP team, you can request — before any scheduled IEP meeting — the information you need to function effectively at the meeting. Under the federal Individuals with Disabilities Education Improvement Act of 2004 (IDEA), the nation's primary special education law, the school is obligated to send you a written response that meets specific requirements of IDEA regulations (IDEA Sec. 300.503).
As part of your request for information, you can and probably should request in writing that the team provide answers to specific questions and follow a logical agenda. Many reasonable questions are available in four recent articles listed below, under resources.
Before meeting with the school's IEP team member, you can request a reasonable agenda. As an example, here's a small slice of what Dr. Gary Brannigan and I wrote about agendas in Negotiating Your Child's IEP: A Step-by-Step Guide:
"Unfortunately, many IEP meetings lack a written sequence of topics, causing a chaotic, meandering, quickly changing and illogical mishmash of topics that causes confusion and unnecessary arguments over goals, programs and placements. Thus, it's critical that you request — in writing — an agenda or sequence that follows the logic of IEPs.
We strongly recommend that you request — in writing — this agenda or SAFE (sequential, active, focused and explicit) sequence.
- Present Levels of Academic Achievement and Functional Performance (PLAAFP)
- Special factors, such as communication needs
- Behavior intervention plan, if needed
- Eligibility statement
- Goals (and in some states and situations, objectives) for each need identified in the PLAAFP."
As you look at the agenda, notice that it closely follows the logical outline of IEP development. What many parents fail to do, but must do, is pay particular attention to the PLAAFP. They fail to recognize that their child's PLAAFP is the foundation of the IEP.
To get sufficiently meaningful, measurable and manageable goals, it must be comprehensive, accurate, relevant and explicit (CARE). Why? It takes a CARE-quality PLAAFP to fully and convincingly justify your child's goals, objectives, progress monitoring and services.
Without a CARE PLAAFP, you're building a house without a foundation. Thus, an annual goal for your child to achieve a second-grade instructional level in reading may look fine, but can easily cause regression if his PLAAFP doesn't say — and you, his case manager and new teacher don't know — he already has strong third-grade decoding, sight vocabulary, fluency and comprehension abilities.
Guidelines to effectively advocate for your child's needs
Following these guidelines over the summer and throughout the academic year will help you before, during and after the IEP meetings. They'll help you know what to do and how to do it.
- Have your child evaluated by well-credentialed experts who can identify and clearly explain his (or her) special needs. Without highly creditable documentation, you're at a tremendous disadvantage. Records and state codes are your oxygen. No oxygen, no strength.
- Make sure you understand and list his most important needs before you discuss them with his full IEP team.
- Make specific requests — in writing — for meeting his needs. Support each request with reports from well-credentialed experts, experts whom the school will likely respect. If you think the school's reports are accurate and comprehensive, give the IEP team quotes from them. Your aim is to justify every goal and service you're requesting.
- Treat people with respect, even if you disagree with them, even if they reject your requests.
- Keep looking for ways to solve problems. Remember that the school's suggestions for solving your child's problems may be as good or better than yours. Avoid the trap of advocating for specific methods, especially ones built on a weak research base. Instead, focus on goals, objectives, progress monitoring and, if needed, frequent meetings to discuss his progress or to adjust or create a new IEP. It's harmful to keep children in programs in which they're stagnating or regressing.
- Discount first impressions of school personnel; they're often wrong. Instead of making snap judgments based on what people first say, how they sound, how they look and who they work for, focus on what they do, especially over time. How do they respond to administrative pressure? How well do they deliver on their promises? Do they work to understand and respond appropriately to your child's needs?
- Avoid confirmation bias. Don't look only for information that supports your views. Don't minimize the importance of information that contradicts them. Don't ridicule or attack such information. Instead, seek all revenant, valid, important information. If information challenges your views, ask two questions: Is this information valid and important? If so, how can the school and I use it to help my child make important progress?
- Keep written, dated records of whatever school personnel send or tell you. If your child's teacher gives you a note, save it. If she calls, email her a summary of what was said. Ask for corrections. Save everything.
- Make a copy of every item you get about your child. Organize the originals in chronological order, but don't write on them. By subject (e.g., psychological evaluation), organize the copies in chronological order.
- Have someone accompany you to all meetings. Make sure she (or he) treats everyone with respect and knows her role (e.g., note-taker). If possible, have a knowledgeable expert or advocate accompany you. Make sure she understands both the relevant laws, your child's disability and research-based interventions. Unfortunately, many well-intentioned advocates have little knowledge of specific disabilities, and many learning specialists (e.g., psychologists, reading specialists) know little about special education laws.
- Take your time at meetings, but never cause unnecessary delays. Work to understand what's being said and what's happening. If necessary, schedule a second, third or umpteenth meeting. Keep meeting until your child gets the program and services he needs, and until he makes satisfactory progress. If people tell you this is unrealistic, think of the consequences of not meeting, of not getting your child what he needs. But remember, never cause unnecessary delays or waste the school's time.
- Send the case manager a written summary of each meeting: what happened, what was agreed to, what you disagree with, why you disagree, remaining issues and concerns, requests for additional meetings and so on. At the end of the summary, sincerely thank school personnel for their time and ask them to correct, within eight working days, any errors in your summary.
- Know and understand the special education and related laws that apply to your child. Not knowing them is like driving without knowing to stop at red lights. Don't, for example, demand the "best education possible" as the courts require far less.
- Understand how your child's school and its IEP teams operate, how they habitually do things and who has the real decision-making power.
- Combat the memory-numbing effects of lengthy inactivity. Contact school personnel every 5-to-10 school days until your child gets the services he needs. Schedule frequent meetings to monitor his progress and problem-solve his needs, and keep his unmet needs in the forefront of school personnel's concerns. But again, never cause unnecessary delays or waste the school's time.
- Be persistent. Be respectful. By your actions — not just your words — help school personnel realize that until your child's needs are met, you will ethically and persistently use the relevant laws to get him a FAPE, a program that is "reasonably calculated" to meet his educational needs, especially those specified in his PLAAFP and goals and objectives.
- Respectfully insist the school frequently monitors his progress. Even programs strongly supported by research may fail him. Small tweaks of his program, such as introducing a new instructional strategy, increasing the power of reinforcers or providing several short practice sessions a week, may produce huge gains.
- No matter what happens, remember your goal: It's not to impress people or prove you're right, but to get your child the right program, the one that meets his social, emotional, communication, recreational, vocational, academic, and in some cases, physical needs.
Advocating for your child is often complex, time-consuming and daunting. It requires ever-increasing knowledge of special education law, your child's educational needs, research-supported interventions and progress monitoring. It requires substantial knowledge and competence in team building, problem solving and conflict resolution. And unfortunately, it often requires considerable expense.
This article only glimpses the surface. So read, study, attend workshops, think critically, develop allies, join a knowledgeable, positively-oriented support group, keep or develop your sense of humor, and grow with your ever-changing child. Though labor intensive, these may be the best investments you ever made.
- Individuals with Disabilities Education Improvement Act of 2004
- Negotiating Your Child's IEP: A Step-by-Step Guide
- How can we increase the value of a student's evaluation?
- How can I prepare my child for the upcoming IEP meeting?
- My child struggles with writing: How can we discover the causes?
- My child struggles with writing: Why typical evaluations don't do the job
- The importance of guided practice in the classroom
- Grouping students: Heterogeneous, homogeneous and random structures
- ELL reading development: Modified guided reading, interventions, support
- The importance of hands-on learning and movement for English learners
- 10 common mistakes band directors make during rehearsals
- Working memory in English language development
- School districts weigh pros, cons of later start times for high schools
- Fostering STEM vocabulary development in ESL students
- Global surgical transfer of care to the wound clinic
- The most important job of a leader
- Is your hospital’s patient-centered approach specific enough?
- Wielding the power of offline discussions
- Remodeling activity to ease, then dip in 2020
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