How to get a 1:1 aide for your child after epilepsy surgery

Children with epilepsy often have behavior issues or safety needs that require them to have more direct supervision than a typical child in the school setting. After brain surgery for epilepsy, your child may have impairments that require supervision (such as vision, auditory, motor, sensory, or attention deficits). In addition, they may have specialized needs that require support throughout the school day.

In this blog post, I’ll cover a several topics to help you with the process of getting an aide for your child in school:

• What is a para? (HINT: It’s not a teacher’s assistant!)
• Why might your child need a para? SAFETY? VISION? BEHAVIOR? (HINT: What do the assessments say?)
• What it means when your child’s IEP says “paraprofessional support” (HINT: It’s not what you think it means!).
• How to write para support in your child’s IEP.
• Reasons why you might NOT want a para.

A paraprofessional is a credentialed education professional who works alongside and under the direction of a certified teacher or school professional.

An aide may or may not have specific training or education. Both of these support staff members may have a different title depending on your school district.

Here are some examples:

• autism aide/autism support staff
• behavioral support aide/behavior support professional
• dedicated 1:1 aide or paraprofessional / dedicated adult support
• educational aide or instructional assistant
• one on one aide or paraprofessional
• paraeducator/ paraprofessional
• personal care assistant
• special circumstances instructional assistant
• special education assistant/ special needs aide
• support staff
• teacher assistant/teacher aide

If your child attends public school, they have certain protections under the Individuals with Disabilities in Education Act (IDEA) or section 504 of the Rehabilitation Act. If your child requires an aide to access the school curriculum and participate with nondisabled peers in school-day activities, the school district may be obligated to provide such support.

If your child is in a private school or homeschooled, the family must provide the needed support. In some cases, insurance may cover a dedicated nurse or an applied behavior analysis (ABA) provider to address specific medical or behavioral needs.

However, getting a general aide for safety, instructional support, or social skills scaffolding will generally come at the parent’s expense. Regardless, it’s important to understand all of the areas in which your child may require support throughout the day.

Under the IDEA, the IEP team (which includes the parents as equal participants) determines the child’s support needs.

But the IEP team cannot make this decision without comprehensive evaluation in all areas of suspected disability.

Assessment helps to define the needs of the child:

• What are the current areas of concern? 
• What needs does the child have that require additional adult support?
• What does the Functional Behavior Assessment indicate?
• Did the Teacher of the Visually Impaired (TVI) and Orientation & Mobility Teacher (O&M) weigh in on safety concerns? Did they observe the child in static and dynamic environments? 
• What other supports does your child need throughout the day for dressing, feeding, toileting, attention, access to curriculum, etc.?
• Is nursing care or other specialized support (i.e. Board Certified Behavior Analyst/BCBA or registered behavior technician/RBT) needed instead of – or in addition to – a paraprofessional?

(NOTE: if your child is homeschooled or placed by you in a private school, he/she is also entitled to a comprehensive evaluation from their local school district at least every three years.)

A doctor’s note, or a letter of medical necessity from a specialist, is rarely enough to get a paraprofessional at school for a child. The school district must assess your child in “all areas of suspected disability.”

If you disagree with the school district’s assessments because they are wrong or missed important facts about your child, you can ask for an independent educational evaluation. (See Step 2: Assessment.)

For example, let’s say the orientation and mobility specialist observed your child on an empty school campus to see if they have navigation and safety needs. This is not the same as following the child in the dynamic setting of a busy school campus with children running across the yard, doors swinging open, and backpacks littering the hallways – and might be grounds for an independent educational evaluation.

There is a good chance that your school district has never worked with a child who has had brain surgery for epilepsy. This is where a letter from your child’s doctor can provide the IEP team with information about your child’s diagnosis and surgery.

This letter can support the need for requested evaluations and help the team understand how to support your child appropriately. You can use our template letter from the neurosurgeon outlining the impact of your child’s surgery (sample letters are on this page).

You can also document your child’s needs yourself (see samples here). Think about every aspect of your child’s day from getting off the bus, walking through the hallways, moving between classes, going to art class or the library, participating in physical education, using the restroom, eating lunch, and even during therapy. Your child may require additional adult support in any of these areas.

The key assessments that help determine the need for 1:1 support are generally:

• Vision
• Orientation and mobility
• Functional behavior
• Physical therapy
• Health
• Neuropsychological

However, additional assessments may be needed to provide a comprehensive evaluation in all areas of suspected disability:

In some cases, a para might hold back the child or get in the way. A child who is developing social or communication skills may not need a para all the time. An older child may be embarrassed to be followed around by an adult.

Think about the reasons a para is needed and make sure that is the right support role to meet those needs.

• If your child requires additional specialized instruction, they should receive instruction from a special education teacher. You don’t want a paraprofessional teaching your child because they are not qualified to do that (see more on this topic below).
• Your child might require a BCBA (Board Certified Behavior Analyst) or RBT (registered behavior technician) to support a behavior plan and collect data throughout the day.

Know what you are asking for and what you are getting when you ask for a para. Discuss with the IEP team whether an appropriately trained para who knows how to step back and provide scaffolded support can provide the support your child needs in an appropriate way.

A dedicated adult support person is not a teacher’s assistant or a classroom para, but rather someone trained in your child’s unique support needs and dedicated to supporting them across their school day.

You want the IEP to state that your child will have a trained, 1:1, dedicated adult support person across the school day. While this individual might be a paraprofessional or personal care assistant according to your school district, the words “trained,” “1:1,” and “dedicated” are vital in describing the support your child will receive (if assessments show that this level of support is needed).

What qualifications must the designated adult support person have?

All paraprofessionals are required to meet certain state and school district certification and licensure requirements. The para must also be qualified to perform the particular duties needed to implement your child’s IEP. 

Detail any special adult support  requirements in the IEP, such as:

• Health aide with CPR training;
• Instructional aide fluent in signing;
• Credentialed Language, Speech and Hearing Specialist;
• BCBA (Board Certified Behavior Analyst);
• Any other required qualifications (for example, “trained in behavior modification,” “knowledgeable in algebra,” etc.)

The needs of the child should define the role of the para (not the classroom teacher or school policy).

The paraprofessional may be trained to provide:

• medical support;
• emotional support;
• behavioral support;
• vision support;
• mobility support;
• social skills support; or
• literacy support.

The duties of the paraprofessional will depend on the type of designated adult support your child requires. This is determined by the comprehensive evaluation and the professional’s qualifications.

For example, a child with significant behavioral challenges can have a dedicated 1:1 BCBA/RBT for behavior support. But, that paraprofessional cannot provide instructional support unless he also has a teaching credential or similar designation as allowed by the state. On the other hand, an instructional aide might not be able to provide behavior support or administer rescue medications.

Your state or district may have general definitions of the role of a paraprofessional.

Under federal law, paraprofessionals can work with a student to reinforce instruction provided by a special education teacher and assist in delivering specially designed instruction – but they cannot be the sole provider of specially designed instruction. The paraprofessional’s role is “to assist in providing special education and related services to children with disabilities.”

Paraprofessionals are not directly responsible for providing special education and related services to children with disabilities; instead, these aides support special education and related services to children with disabilities only under the supervision of special education and related services personnel.

Paraprofessional roles may include:

• Providing personal care support, including toileting assistance;
• Implementing behavior intervention plans and social skills strategies;
• Facilitating social relationships;
• Assisting with the implementation of sensory-based strategies;
• Performing educational tasks (such as note-taking);
• Monitoring the child’s safety;
• Clerical work (such as enlarging materials for a student with visual impairments);
• Assisting with lifting/transferring, positioning in various equipment, adjusting and pushing wheelchairs;
• Accompanying the student on community outings and field trips;
• Supporting the child in their related services (SLP, OT, PT, etc.).
• Providing support in inclusive settings or elective classes.
• Assisting the student during transition, recess, breaks, and lunchtimes.

Paraprofessionals may not:

• Develop lesson plans or select materials for implementation of the lesson;
• Introduce new material/content;
• Create or administer tests;
• Provide the “direct teach” portion of the lesson;
• Develop IEP goals/objectives;
• Design the classroom management system or a student’s behavioral intervention plan (BIP);
• Assign final grades;
• Be responsible for determining or reporting student progress (general class progress or IEP-goal progress);
• Be responsible for any IEP-related responsibilities without the supervision of a certified special educator;.
• Serve as a substitute teacher (even for PE or elective classes).

Paraprofessional Training

IDEA allows for “paraprofessionals and assistants who are appropriately trained and supervised.” States must ensure that “personnel have the content knowledge and skills to serve children with disabilities.” 

However, professional development to paraprofessionals is often general and related to broad topics such as crisis prevention, classroom strategies, and data collection. The school may assure you that they thoroughly train all of the district paras/aides. You must be certain that all support staff are fully trained in your child’s needs, based on their IEP. It’s crucial to define the para’s tasks and responsibilities for your child and document their roles in the IEP. 

Paraprofessionals must:

Paraprofessionals may or may not be permitted to participate in IEP meetings. Your district may have guidelines for this. If the para does not attend IEP meetings, ask for a written statement in advance documenting their interactions with your child and ensure that a member of the IEP team will update the para about any changes to the IEP.

Some school teams say that the para is not even allowed to read the IEP. If your district has such policies, ask to sign a release form to enable the paraprofessional to access your child’s IEP. You might also consider asking for a copy of the board-approved school district policy and even discussing with your school board how prohibiting the para’s involvement in the IEP process may undermine your child’s access to FAPE.

You might consider putting a copy of your child’s IEP in their backpack or communication binder.

You must also ensure adequate training for any backup or substitute paras. For example, it’s a good idea to have two or three trained paras to cover breaks and absences. You can state in the IEP that a substitute para will never work with your child (if warranted).

A paraprofessional is not a replacement for a related service provider or a special education teacher. The paraprofessional can  only implement strategies after receiving instruction from the provider or teacher. These may include:

VISION

• Redirect the child’s visual attention to the teacher and instructional materials;
• Support the child in reading strategies to support tracking or other oculomotor deficits;
• Assist with visual scanning, vestibular, or tactile issues;
• Minimize visual clutter (block out text using a text window; highlight words using a line guide, etc.);
• Ensure appropriate lighting (avoid glare, seat the student with back to the window, away from visual distractions, e.g.);
• Ensure text is the appropriate font size and type at all times;
• Support the student with the use of assistive technology devices.

SAFETY/MOBILITY

• Alert child of obstacles or grade changes (stairs, etc.) in missing visual field;
• Provide ongoing supervision for safety, especially on stairs, playground equipment, in crowded areas, during transitions between classrooms, on field trips;
• Provide support during art, physical education, or any class where the child might need extra assistance;
• Assist with adaptive physical education modifications to help the child participate in age-appropriate PE programs with peers;
• Help the child achieve their gross motor goals;
• Help the child maintain a good upright posture throughout the day either with verbal or tactile cues, proper positioning, and props;
• Help the child use appropriate assistive devices: (walkers, wheelchairs, prosthetic and orthotic devices);
• Monitor the child during meals if there is a history of choking or seizures.

FINE MOTOR & BILATERAL FUNCTION

• Help the child with cutting, gluing, organizing schoolwork, binders;
• Provide verbal cues to incorporate both sides of the body, use both hands;
• Provide prompts for handwriting (spacing & sizing);
• Help the child organize their school environment (including workspace/desk);
• Help the child with the management of backpack and clothing;
• Help the child with toileting, hygiene, etc.

SOCIAL/EMOTIONAL

• Help facilitate appropriate social interactions with peers, navigating friendships;
• Support the child with conversation strategies (such as give and take, beginnings and endings of conversation, how and when to change the subject, formal versus informal speech, and tone of voice);
• Verbally teach strategies for assessing body language (facial expressions, correct social distance);
• Help the child stay on topic;
• Help the child with self-monitoring, verbalizing each step.

INSTRUCTIONAL SUPPORT

• Check for understanding, especially for complex tasks;
• Clarify concepts, alert the teacher if the student does not understand;
• Help modify instructional materials (color coding, highlighting, boundary marking);
• Help the child with note-taking, or take dictation for the child;
• Help the child manage their instructional materials, planner; 
• Help the child with their props, such as slant board, assistive technology devices;
• Supplement instruction in reading and mathematics.

AUDITORY PROCESSING/ATTENTION

• Redirect the child’s auditory attention to the teacher or instructional materials;
• Repeat (rather than rephrase) instructions to ensure the child understands the lesson;
• Check frequently for comprehension;
• Remove the child from a loud environment if causing distress;
• Provide listening/attention breaks or noise-canceling headphones;
• Mark transitions between activities;
• Allow the child to expand upon their ideas to help them process information verbally;
• Take dictation (allowing the student to use verbal reporting for assignments);
• Highlight essential passages in instructional materials;
• Help organize large projects.

ADHD/BEHAVIOR

• Redirect attention to a task; have the child focus on one task at a time;
• Support social skills or executive function skills;
• Re-teach curriculum as needed;
• Underline or highlight keywords in a text;
• Implement a sensory diet;
• Provide behavior management/redirection;
• Provide positive behavior supports and reinforcements;
• Prevent elopement;
• Collect A-B-C data;
• Implement a behavioral plan as a result of a functional behavior assessment;
• Implement an applied behavioral analysis (ABA) program.

HEALTH/MEDICAL

• Monitor for seizures; follow seizure protocol;
• Monitor for signs of hydrocephalus/shunt failure;
• Monitor for headaches;
• Understand and support temperature regulation issues;
• Monitor for allergies;
• Monitor feeding tubes, provide tube feeds;

NOTE: Aides may or may not administer seizure meds; this varies by state and district policies. Your child might require a dedicated aide and a dedicated nurse, based on the child’s needs.

GENERAL

• Fill out daily communication log;
• Ensure provision of  accommodations at all times;
• Ensure that daily visual schedule is updated and implemented;
• Write out daily schedules;
• Prepare the child for transitions:
• Collect behavior data or other data.

The IDEA entitles all students to an education aligned with their individual needs in the least restrictive environment (LRE). This means that the school district must educate special education students – to the maximum extent appropriate – with non-disabled peers.

“… special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a student is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” IDEA section 1412(a)(5)(A) .

This means that a general education classroom with a paraprofessional might be your child’s least restrictive environment. Or, a special day class with a 1:1 aide may be more appropriate. These decisions are made by the IEP team (which includes the parent) based on comprehensive evaluation in all areas of suspected disability.

Before discussing placement, the IEP team must decide whether the child needs 1:1 support.

Remember – placement is always the last decision.

If it’s not in writing, it didn’t (or won’t) happen.

Be sure to detail in writing in your child’s IEP:

• How much time does your child need support throughout the school day? In what settings? At what times? With what activities?
• What happens if the dedicated para is sick? On a break? Write a backup plan! Is there a backup para trained for absences?
• In some cases, it may make sense only to allow trained paras to work with your child for safety, health, or behavior reasons. In this case, the IEP must expressly state that no substitute paras will be allowed and that there will be several trained adults who could rotate in for support in the event of a staff absence.
• What training is needed for the para(s) to successfully support your child? How often? Who will provide the training? What will the training consist of
• What are the qualifications of a para that your child requires explicitly?
• Is time set aside for the para and teacher to collaborate on the child’s goals and learning needs? Will the para need collaboration time with other classroom staff, teachers, or related service providers?

If the IEP states “a paraprofessional will be available at all times” that just means that a para is in the building somewhere! It does not mean the paraprofessional is actually with your child throughout the day.

Be absolutely crystal clear in this part of the IEP (these details should be listed under the supplementary aids and services section of the IEP).

Let’s say you requested a trained, dedicated 1:1 adult support person across the school day, and you have evidence to support the needs (in the form of comprehensive, valid school district evaluations or IEEs), and the district still refuses to provide this level of support. What can you do? 

• Give the school’s proposed plan a trial period (a week or two, or even a few days) to see if their offer of support is sufficient. In preschool, for example, there is generally a better adult-to-child ratio than in elementary school, and there may be enough supervision to meet your child’s needs.
• Ask the school district to provide prior written notice (PWN) for refusing to provide a trained, 1:1 dedicated adult support person across the school day. The prior written notice must state why they are declining and any evidence that the service is unnecessary. 
• Suppose you don’t feel safe sending your child without dedicated adult support. In that case, you may want to sign the IEP with exception, stating that your “exception” is to their insufficient dedicated adult support, and that you will keep your child home due to safety concerns until the team can come up with a solution.
• You can hire an education advocate or a special education attorney to help you (the Council of Parent Attorneys and Advocates has a state-by-state directory).

Navigating this process can be extremely difficult and challenging. It may be necessary to fight to get what your child needs.

Quick Guide: 1:1 Aide/Paraprofessional After Epilepsy Surgery

Sample needs documents: SAMPLE Kindergarten letter requesting 1:1 aide, SAMPLE Needs Assessment for kindergarten post-hemispherectomy, SAMPLE Needs Summary for Pre-k/Kindergarten

A Day in Our Shoes, Lisa Lightner: How to Get a 1:1 Aide/Para added to your child’s IEP. 

Texas Education Agency: Working with Paraprofessionals: A Resource for Educators of Students with Disabilities

Understood.org: Paraprofessionals: What You Need to Know