Step 2 in the special education process is assessment. The school district is required to provide a comprehensive educational evaluation which assesses your child in “all areas of suspected disability.”

This is probably the most important part of the IEP process, as it helps the team understand the child’s strengths and needs.

Know this step!

What is a comprehensive evaluation plan?

The school district must assess your child in all areas of suspected disability. These assessments must be done at least every three years (commonly known as the “triennial”) but more often if there has been a change in skills (e.g. improvement or regression), during times of transition (e.g. when the child is transitioning to kindergarten), or when a parent requests evaluation. Evaluations cannot be done more than once a year.

Do I need a letter from my child’s doctor to get a comprehensive evaluation plan from the school?

No, but it is helpful if your child’s neurologist or neurosurgeon writes a letter to the school which explains what can happen after epilepsy surgery. We have several letters here depending on the type of surgery your child as had.

What assessments should be in a comprehensive evaluation plan?

For most children who have had epilepsy surgery, there can be many areas of suspected disability. Each area of suspected disability requires its own assessment.

Assesses the child’s visual acuity, auditory acuity, collects information for a seizure plan and hydrocephalus symptom awareness plan. This assessment is often performed by the school nurse.

Information and Resources

Assesses how the child uses vision. For example, children who have had an occipital lobe removed or disconnected, such as in hemispherectomy, TPO will have  homonymous hemianopsia, a type of cortical/cerebral vision impairment which can greatly impact how they learn to read. Other surgeries, such as temporal lobectomy, can result in loss of vision in the upper quadrant of the visual field. Even small surgeries like laser ablation can cause vision challenges if the visual processing challenges. Cortical/cerebral vision impairment may also be a result of the underlying condition which caused the seizures or years of taking anti-epileptic medication.

After epilepsy surgery, a good functional vision assessment will identify areas of concern in safety, navigation, and reading, for example. After hemispherectomy, components should include: 1) visual acuity; 2) field of vision; and 3) contrast sensitivity.  This assessment is usually performed by the Teacher for the Visually Impaired

Information and Resources

  • Understanding vision after one occipital lobe is removed (pre-recorded webinar): As part of our collaboration with Perkins School for the Blind, this webinar explains the various challenges a child with homonymous hemianopia will experience in school and everyday life.
  • Vision After Hemispherectomy, TPO, and Occipital Lobectomy: This guide summarizes the various visual impairments a child will have after hemispherectomy, TPO disconnection, and occipital lobectomy, and how they can affect a child’s daily living, functional mobility, and access to the educational curriculum in school. Download an English PDF    Download a Spanish PDF
  • Vision After Hemispherectomy, TPO, and Occipital Lobectomy (web content): We break down the various parts of vision that can be affected by occipital lobe surgeries.
  • Vision Evaluations After Epilepsy Surgery: A complete annual evaluation from a neuro-ophthalmologist is beneficial to children after hemispherectomy, TPO disconnection, and occipital lobectomy. Early diagnosis, coping strategies, and patient rehabilitation are critical after these surgeries. Download an English PDF     Download a Spanish PDF
  • Helpful Educational Strategies For Children with Homonymous Hemianopia: A child with homonymous hemianopsia should learn as early as possible to advocate for themselves. This guide provides key strategies for one of the most important social, emotional, and educational skills we can teach, self advocacy. Download an English PDF     Download a Spanish PDF

Assesses basic hearing and listening skills, including the child’s ability to localize, lateralize, and discriminate sounds and recognize patterns. Research on children  after surgeries which remove a temporal lobe, such as hemispherectomy, have found difficulties with  dichotic listening and speech in noise. Assessments should include speech in quiet, speech perception in noise, filtered sound, and dichotic listening. Only audiologists can diagnose central auditory processing disorders. The child must be at least seven years old for most assessments and have an IQ of approximately 80 to participate in most central auditory processing assessments.  (Click here for guidelines on central auditory processing assessment from the American Academy of Audiology and here for a description of auditory processing assessment and related classroom challenges from the Educational Audiology Association.)

Informative Videos and Guides

  • Central Auditory Processing After Hemispherectomy (PDF): This guide is helpful for any child who has had a temporal lobe removed or disconnected, including after TPO or temporal lobectomy.
  • Strategies for Central Auditory Impairment After Hemispherectomy: This guide is helpful for any child that has had a temporal lobe removed or disconnected, including after hemispherectomy and TPO. There are many management options to address Central Auditory Processing Disorder. These can include therapeutic and environment interventions and compensatory strategies to help the child to be as successful as possible. Download an English PDF   Download a Spanish PDF
  • How The Brain Hears (video): Dr. Frank Musiek, PhD, CCC-A, director of the neuro-audiology laboratory at the University of Arizona and member of The Brain Recovery Project’s scientific advisory board, discusses inevitable central auditory processing challenges in children after hemispherectomy, posterior quadrantic resection/disconnection, temporal lobectomy, or who have had a history of temporal lobe seizures.
  • Hearing After Hemispherectomy (video): Dr. Frank Musiek, PhD, CCC-A, and Director of the University of Arizona’s NeuroAudiology Lab discusses how hemispherectomy surgery affects the brain’s ability to process sounds and words at the 2016 Hemispherectomy Conference and Family Reunion.

Assesses the child’s locomotor skills and object control, specifically in the areas of fine manual control, visual-fine motor skills, body coordination, ambulation, balance and vestibular reflexes as well as strength and agility. This assessment is typically performed by the school’s physical therapist.

After hemispherectomy surgery, fine motor control of the “good hand” is affected as well, as well as pressure, touch, and temperature sensitivity. An evaluation should include an assessment of the unaffected extremities.

Assesses the sensory integration processes that underlie learning and behavior.  Children after hemispherectomy and similar disconnective surgeries require a comprehensive evaluation of their sensory needs, including proprioception, self-regulation and self-modulation. This is especially important in surgeries like  hemispherectomy surgery or TPO where the somatosensory cortex is removed, which can result in sensory processing issues. This assessment is usually performed by an occupational therapist.

Assesses how a child with vision challenges travel safely both indoors and outdoors, with or without assistance, in static and dynamic environments, and consider sensory, navigational, visual, and mobility skills. This is typically performed by a Teacher of the Visually Impaired and may be included in the functional vision assessment above or may be a separate assessment. This is especially important for children with visual field loss, such as homonymous hemianopia.

Assesses the child’s academic skills in pre-reading/reading, math, and writing, including oral expression, listening comprehension and written expression. This assessment is performed by the school psychologist.

Assesses the cognitive functions impacted by the disconnection surgery. Aspects of cognitive functioning that are assessed typically include attention/concentration, language processing, visuo-spatial perception, verbal learning and memory, visual learning and memory, speed of processing, sensory-perceptual functions, motor speed and strength, motivation/symptom validity, orientation, learning, memory, intelligence, language, visuoperception, and executive function. This evaluation is very different than the psycho-educational evaluation performed by the school psychologist because it is more detailed in nature and focuses on how the child’s brain function affects his/her cognitive and behavioral function.

Informative videos and guides

  • Neuropsychological Assessments Before and After Epilepsy Surgery (video): Mary Lou Smith, PhD, is a clinical neuropsychologist at Sick Kids Hospital in Toronto, Canada. Over the past several years, her major area of research has been on the cognitive and behavioural co-morbidities associated with epilepsy. Her studies have involved individuals with intractable seizures with onset in childhood and have addressed four major areas: quality of life, surgical outcome, plasticity of language representation, and memory. She is one of few neuroscientists who are longitudinally following children with epilepsy treated with surgical or medication, children with high functioning autism, and children born preterm. Many of these studies involve examining the cognitive, academic, social, emotional, and behavioral effects of these disorders and the evaluation of their structural and functional neuroimaging correlates. She has particular interest in the long-term effects of surgery on children and its outcomes in young adulthood.
  • Neuropsychological Assessments Before and After Hemispherectomy (video): Michael Kirkwood, PhD, MA, Associate Clinical Professor, Physical Medicine & Rehabilitation, Director, CHCO Rehabilitation Psychology / Neuropsychology and Co-Director, CHCO Concussion Program, discusses the finer points of neuropsychological assessments after hemispherectomy, including comparisons to and limitations of school psycho-educational assessments.

Technically part of the psychoeducational report, a comprehensive reading evaluation which assess the child’s literacy/pre-literacy skills, including phonological awareness, phonemic awareness, vocabulary, comprehension, and fluency. Children with a history of drug-resistant seizures have challenges with reading which may continue after surgery.

For example, research after hemispherectomy shows that children often struggle with several domains of literacy skills while maintaining individual strengths.  This requires “flexible literacy instruction based on standardized assessments that analyze individual strengths that are used to generate intervention strategies.”1  These assessments should be performed by a Certified Reading Specialist or school psychologist and may sometimes be incorporated in the educational evaluation, the neuropsychological evaluation, or the psycho-educational evaluation.

Informative Videos and Guides

The Reading Brain: Neuroscience and Implications for Assessments After Hemispherectomy (video): Joanna A. Christodoulou, EdD, works at the intersection of education and neuroscience. Her program of research, conducted at MIT in the Gabrieli Lab and at MGH Institute of Health Professions, focuses on brain and behavior correlates of development, difficulties, and intervention effects for reading. This session at the 2017 Pediatric Epilepsy Surgery Conference and Family Reunion focuses on the brain circuits involved in reading and how they are impacted after hemispherectomy surgery. It includes information about which assessments are appropriate after hemispherectomy.

Assesses the child’s speech, articulation, spoken/non-spoken language, pragmatics, and communication skills. This assessment is typically performed by a speech pathologist.

Assesses what aids and devices can help the child access to curriculum, and to minimize the academic demands on the child via these resources if possible so as to free up cognitive resources for richer learning. This assessment is typically performed by a certified assistive technology professional.

Assesses what aids and devices can help improve the child’s communication. This is not limited to non-verbal children only. Communicative competence can be a struggle even for those who speak. This assessment is typically performed by a certified assistive technology professional or speech-language pathologist.

Assesses the child’s ability to participate in the school’s physical education program and access the school environment, especially related to health and well-being as well as functional gross motor skills training in relation to mobility and play, endurance and conditioning programs for physical fitness, balance, body awareness, environmental adaptations, accommodations, and adaptive techniques. This assessment is typically performed by a certified adaptive physical education therapist.

Assesses the purpose/reason for behaviors displayed by children with cognitive or communication challenges. This assessment includes a parent questionnaire and is usually completed by the school psychologist or behaviorist.

Assesses whether the child’s disability may be serious enough to warrant special mental health and therapeutic interventions to enable him to make friends and socialize appropriately.

How To Request A Comprehensive Educational Evaluation

You should request a comprehensive educational evaluation in writing and send it to the special education director for your district. We recommend that you take two copies to the special education office – leave one copy for the school and ask the school secretary to date stamp and sign your copy. You can also email it to the director or IEP contact.

Some states require special forms when requesting an evaluation. Make sure you check whether your state requires a separate form.

Our sample letter requesting a comprehensive evaluation after hemispherectomy contains more information than would typically be included in a request letter, however, the information is important so that school district personnel understand the complexity of the functional impact the procedure has on the child. Feel free to delete the assessments that your child does not need or is too young to complete (e.g. not all children will need a mental health assessment; central auditory processing assessments may be difficult for a child less than 7 years old).

A letter from your child’s neurologist or neurosurgeon which outlines functional challenges after surgery is also helpful to the team. We have several here for you.

What If The School Does Not Assess In All Areas Of Suspected Disability?

A school district must assess a child in “all areas of suspected disability.”  If they do not have on staff the appropriately credentialed person to perform any of the assessments, they must hire someone to perform the assessment. “We don’t do that here” is not a valid response to a parental request for assessment.

If your child was assessed in some areas, but you now realize that other assessments are needed, you do not need to let the school assess your child in those areas. The school only gets “one bite at the apple” (See this letter from the U.S. Department of Education which addresses this issue.) You can request an independent educational evaluation (see below) in the areas that were not assessed.

What If The School’s Assessments Were Inadequate or Incorrect?

If you disagree with the school district’s assessments (for example, they were inadequate or incorrect), you need only tell the district that you disagree with them and request an independent educational evaluation.

How To Get An Independent Educational Evaluation

You can request an independent educational evaluation (IEE) by simply stating that you disagree with the school’s assessment(s). Similarly, if you have reviewed the assessments and disagree with their conclusions, testing methods used, or other areas, you may also request an IEE for those assessment areas.

This video from Your Special Education Rights does a great job of explaining this process:

You get to choose the independent evaluator subject to the school’s requirements for assessors. You are not required to choose only from their list of approved assessors. Understand, however, that if the school district pays for the independent educational evaluation, they are entitled to see that evaluation even if you disagree with the results therein.

“FUND OR FILE”

Once the school district receives your IEE request, they must either FUND the independent assessments or FILE due process against YOU! Use your IEE request wisely. If you ask for too many independent assessments, you may increase the chances of a due process filing against you.

Private Assessments

If you can afford to have your own private assessments done, or have insurance that will cover the assessments, you should have them done. Federal law requires school districts to consider private assessments.

How Do I Find An Independent or Private Evaluator?

We encourage you to find evaluators who are employed by a major children’s hospital that performs a high volume of epilepsy surgery each year. If you are unable to do so, we suggest you search for an evaluator here:

American Academy of Pediatric Neuropsychology – click here to search for a neuropsychologist in your area

North American Neuro-Opthamology Society – click here to search for a neuro-opthamologist in your area

American Academy of Audiologists – click here to search for an audiologist in your area. You should make sure to ask if they have equipment to test for central auditory processing disorders.

Academy of Neurologic Physical Therapists – we recommend that you first attempt to find a pediatric physical therapist in your area with a neurologic specialist certification. You can search at the American Physical Therapy Association – click here to search for a pediatric physical therapist in your area.

ADVOCACY TIP!

The assessments are arguably the most important part of the IEP process. Understand the various assessments that are needed. If you can afford to pay for any assessment to be performed by a private evaluator, this is where to spend your money. Be sure to ask the private evaluator to include intervention strategies and recommendations for the supplementary aides and services your child should have at school.

More Information

Take a moment to watch these webinars presented by Audrey Vernick, our Director of Education Advocacy and Training. These webinars from the Family Voices of California are intended to provide information to help parents and professionals advocate for special education programs and services for children after brain surgery.

Resources

Comprehensive Assessment Spreadsheet NEW January 2020!

This spreadsheet contains lists of assessments needed for various types of disabilities.  It will be updated frequently. If an assessment is missing, please email Audrey Vernick at avernick@brainrecoveryproject.org.

How to use the assessments spreadsheet

Before you use the assessments spreadsheet, watch this video to learn how it’s organized and how to use it best.

Sample Assessments

The following are actual assessments of children after epilepsy surgery. We provide these as an example of what a good evaluation will include.

CENTRAL AUDITORY PROCESSING EVALUATION

Age: 9 years old

Diagnosis: Stroke

Surgery: Right Hemispherectomy

CENTRAL AUDITORY PROCESSING EVALUATION

Age: 12 years old

Diagnosis: Cortical Dysplasia

Surgery: Right Hemispherectomy

ORIENTATION & MOBILITY ASSESSMENT

Age: 13 years old

Diagnosis: Rasmussen’s Encephalitis

Surgery: Right Hemispherectomy

ASSISTIVE TECHNOLOGY ASSESSMENT

Age: 5 years old

Diagnosis: Brain tumor

Surgery: Right Hemispherectomy

COMPREHENSIVE OPTOMETRIC & VISUAL PROCESSING EVALUATION

Age: 12 years old

Diagnosis: Cortical Dysplasia

Surgery: Right Hemispherectomy

CENTRAL AUDITORY PROCESSING EVALUATION

Age: 12 years old

Diagnosis: Cortical Dysplasia

Surgery: Right Hemispherectomy

IEP AT A GLANCE

This report allows the team a quick view of the child’s needs, goals, accommodations, and services.

Age: 14 years old

Diagnosis:  Stroke

Surgery:  Right Hemispherectomy

Step 3 – Identification