Knowing What to Advocate for in an Individualized Education Program (IEP)

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A mother and son talking to a teacher at an IEP meeting.

In an effort to help you advocate for an appropriate education for your child, as is your child’s right due to IDEA Part B, let’s dive into the ins and outs of the Individualized Education Program (IEP) process, beginning with a look at its purpose, continuing with expectations of the IEP meeting, and concluding with advice to parents on navigating the IEP process. For a student to be eligible under the category of visual impairment, including blindness, some states require a certain level of visual acuity or field loss as diagnosed by a qualified professional.

The purpose of an IEP

Federal law requires public schools to develop and implement IEPs for eligible children with one or more disabilities. These IEPs have multiple purposes:

FAPE:

IEPs are designed to provide a child with a disability with a FAPE (Free Appropriate Public Education).
FAPE starts with the regular education provided to nondisabled children.
All components of regular education must be included unless the IEP team determines that some part of regular education is inappropriate, irrelevant, or not timely for the child with a disability.
Disability-related needs are incorporated alongside regular education services; they do not replace them.
In general, IEPs should provide both regular education and the disability-related services the child needs.

Disability-related instruction includes providing the child with the necessary instruction to enable their involvement and progress in the regular education curriculum, such as the Expanded Core Curriculum (ECC). The ECC covers subjects and skills designed for students who are blind or low vision to study the basic educational curriculum alongside their sighted classmates.
The ECC encompasses braille instruction, including both reading and writing, unless it is considered inappropriate
Note: the need to read and write letters and numbers is a regular education need, but regular education print may not be an efficient, effective, and/or sustainable tool for a child with blindness or low vision, so this child needs disability-related instruction in braille to ACCESS regular instruction in reading, writing, math, etc.
The ECC includes instruction in cane travel, orientation, and mobility so that the child may maintain or develop age-appropriate awareness of self in relation to the environment and to move oneself as independently as is possible.
The ECC includes instruction in accessible assistive technology so that the child may perform age-appropriate tasks efficiently, effectively, and for an age-appropriate sustainable length of time.
Additional disability-related instruction may include improving fine motor skills with an occupational therapist, such as typing on a computer keyboard, using finger gestures on a tablet, or developing gross motor skills with a physical therapist, such as developing core strength for balance and posture or coordination for climbing stairs, running, etc.

Regular education relies on many tools that are not disability-friendly. Through IEPs, schools must provide children with disabilities with tools and equipment they need:

To access educational content
To meet disability-related individual needs
Note: this does NOT include surgically-implanted medical devices.

Preparation for life after high school:

The overarching purpose of the law that provides for IEPs is to prepare eligible children with disabilities for post-secondary (after high school graduation):

Education (all kinds, from trade schools to universities)
Employment (full- or part-time, independent contracting, starting a business, etc.)
Independent Living (everything else and, to the extent the individual cannot be fully independent, the IEP should prepare the individual for as independent a life as possible.)

In sum, a disabled child’s “IEP” is designed to set forth the way a school will meet the educational and disability-related needs of the child.

The IEP meeting

In order to devise a plan for appropriate, individualized education, your child’s entire educational team should gather at an “IEP meeting” to discuss your child’s strengths, abilities, needs, and the results of key assessments, including a Functional Vision Assessment, Learning Media Assessment, Orientation and Mobility Assessment, Assistive Technology Assessment, and an assessment documenting the present levels of performance within the nine domains of the ECC. Based on the information gathered, the team will develop and draft the legally-binding education plan on at least an annual basis.

Let’s look at the specific components of an IEP meeting

The following will be discussed and documented at your IEP meeting.

Present levels

Your child’s present levels of educational and functional performance will be discussed.
The team considers information (“present levels”) provided by ALL members including the child and caregivers.
Many “present levels” should be based on the results of key assessments.
From these present levels, the team determines your child’s strengths, abilities, and needs.

Goals

Measurable annual goals should be created which are robust and meaningful.
The purpose of the goals is to measure annual progress individualized to your child.
The U.S. Supreme Court has found that the IEP should be “reasonably calculated to enable the child to make progress appropriate in light of the child’s circumstances [such as the child’s disability/disabilities and individual needs]. Endrew F. v. Douglas Co. Sch. Dist., 137 S. Ct. 988 (2017).

Other needs

Sometimes, a child achieves IEP goals early; in such cases, we need to develop new goals
We will also plan related services, which may involve specialists like Speech and Language Pathologists, Occupational Therapists, and more.
Additionally, we’ll establish supplementary aids and services, such as assistive technology or assistance from paraeducators.
We will determine program modifications, including accommodations and adjustments to the regular education program, to ensure they are appropriate and the least restrictive for your child. (Note: Accommodations provide access to instruction, materials, testing, technology, and the environment, while modifications alter the standard workload for the student.)
We can identify and document support for school personnel.
We’ll specify the timing, frequency, and location of services.
We will document any instances where your child will not participate with nondisabled children
Finally, we’ll record any testing accommodations.

The team will determine how to measure progress and how to regularly inform parents. As a parent, you are an essential and integral member of the IEP and IEP meeting. You know your own child well, including your child’s strengths and areas of need. By working as a team, you and school staff members can develop an IEP that provides a FAPE, meets your child’s disability-related needs, and supports your child’s development of essential post-secondary skills for education, employment, and independent living.

Navigating the IEP

Educate the educators about your child

Blindness is a low-incidence disability; most of the IEP team members have never worked with a student who is blind. You might have to educate them!
At the beginning of the school year, write an introductory email to your child’s educational team highlighting your child’s IEP and best practices in working with your child. Include a picture of your child, their interests, and what they did over the summer. As your child gets older/more capable, you can include them in writing the email.
You are an expert, too, because you know your child best. While school staff members have experience with educational theories and methods, you have expertise with your child.
You spend much more time with your child than school personnel do, and your knowledge of your child’s likes and dislikes, strengths and areas of need, motivators, personality, etc. can help the teachers plan for instruction.
If you disagree with something, don’t hesitate to voice your opinion.

Value introductions

IEP team meetings may have many school personnel/contractors in attendance or there may be new members, so beginning IEP meetings with introductions allows each person to know/remember the name and role of each participant.
Introductions also remind team members of the talents and resources on the team (including the expertise of the parents and the child).

Don’t hesitate to call a team meeting

As a parent, you have the right to ask for a team meeting anytime. While you probably don’t want to have a meeting every day, having meetings with team members during the IEP term can be very valuable.
IEP meetings can happen more than once per year, and the start of a new school year, a move to a new school site, or new and departing IEP team members can all be good reasons to call an IEP team meeting.
Other reasons to meet with the IEP team include a need to add something (a service or accessible assistive technology) or to change the IEP because it’s not working. Sometimes, a child achieves IEP goals early; in such cases, we need to develop new goals. Other times, the plan isn’t working or the child’s needs change. In those cases, the IEP should evolve.
An IEP is designed to serve your child.

Document everything

There is an adage in business: “If it’s not written down, it didn’t happen.” A corollary is: “If it’s not written down, it won’t happen.” These adages hold true in education, especially in the world of IEPs.
Everything that is agreed to in the IEP meeting must be included in the IEP. The IEP overrules verbal agreements (before or after the meeting).
It’s O.K. to try new tools, etc., but access to them is not guaranteed if it’s not in the IEP.
Emails about new equipment or extra instructional time are not enough; make sure the team amends the IEP to include the addition.
Please know that the school may not stop doing something required in the IEP without holding a meeting with the team. The meeting, including you, will discuss whether the IEP should be amended.
Keep track of your communications with the school.
Consider an “IEP Binder” or file folder to collect all paper documentation from the school.
Keep an electronic folder of documents and emails (you can use Control + F to search multiple files at a time).
Document the content of phone conversations with emails.
At the end of any meeting or conversation, ask what will happen next.

Know you are not alone.

You can have anyone that you want attend the IEP meeting with you: a friend, an advocate, an adult with blindness/low vision, an outside service provider for your child, etc.
Advocates can identify potential solutions for your child and can help you understand the IEP process and how to effectively communicate with school officials. NOTE: If you want to have an attorney present, the school district has the right to have their attorney also.
It is best to notify the school district before the meeting of the names of any people you wish to invite to the meeting.

Consider recording the IEP meeting.

Recording the meeting empowers you to participate in the meeting without worrying about taking copious notes. This also allows you and others to review everything that went on at the meeting.
Provide notice to the school personnel at least 24-hour notice if you would like to record the meeting.

Parents have the right to disagree with an IEP.

You don’t have to sign on the IEP if you don’t agree with its terms, or you can write in an exception, or exceptions.
If the school district agrees, you can continue the existing IEP for an extended period of time. This is not ideal, but it is possible and sometimes necessary if you do not agree with the documents many aspects/terms.
BEWARE: If the school district sends you a written notice of an IEP it wants to implement (a “Prior Written Notice (PWN)), refusing to sign the IEP is not enough. If you receive a PWN, you must take all the steps needed to continue your disagreement; check your “Procedural Safeguards” document for details.

You have the right to disagree with the school’s assessments.

If you disagree with the school’s assessment(s) you can request an independent education evaluation (IEE). This evaluation would be at the expense of the school district.
The IEE assessor is someone you choose who is independent of the school. Schools may have some rules about who can perform the IEE (such as qualifications needed, rates of pay, etc.). The school must follow these same rules with all of the assessments they perform. While you must follow applicable rules, you do have the right to choose the IEE assessor.

Value reevaluations/triennial assessments.

Every three years, the school district must discuss a reevaluation//triennial assessment.
Don’t just waive this reevaluation. It can be very helpful to ensure that your child is receiving needed support in all areas.

There is life outside the IEP.

IEPs can be stressful. Don’t neglect your needs or the needs of your child; explore and engage in self-care strategies that work for you as a parent and work for your child.
Enjoy your child and your family. IEPs will end at high school graduation (or age 21). Your family relationships will last a lifetime.