Getting the right accommodations into a school plan is half the battle of supporting a child with Alström at school. This tool gives you exact language you can copy, adapt, and bring to IEP, 504 Plan, or EHCP meetings. Organized by category so you can pick what's relevant.
The language here is written to pass review by school administrators, special education directors, and legal teams while still serving your child.
How to use this pack
1. Read through and check the accommodations relevant to your child
2. Copy the language directly into your draft IEP/504/EHCP document
3. Customize any specific details (frequency, equipment, staff)
4. Discuss with the school team — they may push back on some; have your reasoning ready
5. Have written support from your medical providers when needed
6. Document everything — accommodations agreed verbally need to be in writing to be enforceable
VISION-RELATED ACCOMMODATIONS
Lighting and seating
> Preferential seating away from windows and direct overhead fluorescent lighting. Student is permitted to choose seating that minimizes glare and provides adequate but not excessive lighting for residual vision.
> Soft, indirect lighting in the classroom is preferred. Student may use task lighting or request adjustments to ambient lighting. Fluorescent lighting may be supplemented or replaced with LED lighting where possible.
> Permission to wear tinted lenses or sunglasses indoors at all times. Student has photophobia secondary to cone-rod dystrophy and requires protective lenses for visual comfort and function. This accommodation extends to all classrooms, hallways, lunch areas, and outdoor activities.
> Hat or visor permitted indoors and outdoors as additional protection from light sensitivity.
> Adjustment time when entering brightly-lit spaces (gym, auditorium, outdoor environments). Student may need 30–60 seconds for visual accommodation; assignments and instructions should not be given during this period.
Materials and instruction
> All materials provided in [Braille / large print (___ point font) / audio / electronic format] as appropriate for student's learning media. Materials must be available at the start of each instructional unit, not after delays.
> Use of a refreshable Braille display and/or computer with screen reader for all classroom and homework assignments. Compatible software includes [JAWS / NVDA / VoiceOver / TalkBack].
> Tactile graphics for math, science, geography, and other visual content as needed. Diagrams, maps, and figures must be provided in tactile format.
> Bold, dark-line writing materials (felt-tip markers, dark-line paper) for handwriting tasks where applicable.
> Reduced glare on materials — matte rather than glossy paper, dark text on cream or off-white background, high-contrast formats.
> Pre-teaching of new vocabulary and concepts before introduction in the regular classroom, particularly for visually-loaded content.
Testing and assessment
> Extended time on all assignments and tests — minimum 1.5x the standard time, more as needed for visually intensive tasks. This accommodation extends to all standardized testing, classroom assessments, and college-entrance exams.
> Alternative assessment formats — student may demonstrate knowledge through verbal response, audio recording, or assistive-technology-supported written response when standard formats are inaccessible.
> Quiet, low-light testing environment for all major assessments.
> Access to assistive technology during testing — including Braille display, screen reader, magnification, and audio output.
> Reader/scribe available for assessments where the student requests one. Reader/scribe must be trained to read mathematical content, scientific notation, and other technical material accurately.
Specific instructional support
> Teacher of Students with Visual Impairments (TVI) services — direct instruction for [___] hours per week, plus consultation with classroom teachers and other staff. TVI to address Braille literacy, accessible learning media, technology training, and Expanded Core Curriculum needs.
> Orientation and Mobility (O&M) services — direct instruction for [___] hours per week, addressing cane travel, environmental orientation, and independent navigation in the school and community.
> Pre-cane and white cane familiarization as appropriate for current and anticipated mobility needs.
> Independent Living Skills instruction as part of the Expanded Core Curriculum, including daily living, social skills, recreation, career education, self-determination, and assistive technology use.
HEARING-RELATED ACCOMMODATIONS
Equipment and environment
> FM/DM system with classroom-worn microphone for teacher. Teachers must be trained in proper microphone use and the system must be checked daily. Backup batteries and equipment must be available.
> Soundfield amplification system in the classroom to support all students including those with hearing loss.
> Preferential seating to optimize hearing access — typically near the front of the classroom and away from sources of background noise (HVAC, hallway, doors).
> Visual presentation alongside auditory — important information must be written, projected, or otherwise visually presented in addition to spoken.
> Captioning for all video content and educational media. Where commercial captioning isn't available, real-time captioning services are provided.
> Quiet testing environment for all major assessments — separate room or designated quiet space.
Communication support
> Repetition of instructions as needed, in clear voice and with the speaker facing the student. Teachers should not face away from the student when speaking important content.
> Note-taker, peer notes, or audio recording permitted during all instructional time. Student is not required to take their own notes during instruction.
> Allowance for student's chosen communication mode — spoken English, sign language, tactile signing, or written exchange — depending on hearing status.
> Speech-Language Pathologist (SLP) services — direct instruction for [___] hours per week, addressing communication adaptation, auditory training, and language support.
Specific to cochlear implants or hearing aids
> Permission to wear and operate hearing aids and/or cochlear implant processor at all times during the school day, including during physical education and recess. Equipment is the student's medical device.
> Battery replacement supplies and accessories provided as needed. School nurse or designated staff trained to assist with equipment as needed.
> Backup equipment available in case of malfunction — replacement processor, cables, batteries.
DIABETES MANAGEMENT (when applicable)
> Permission to test blood glucose and administer insulin as needed throughout the day, including during instructional time. Student may use a continuous glucose monitor and insulin pump.
> Snacks accessible at all times for blood sugar management. Student may eat snacks in classrooms when needed for glucose management.
> Trained school nurse available for emergencies (severe hypoglycemia, hyperglycemia, ketoacidosis). After-hours and substitute coverage planned.
> Diabetes Medical Management Plan (DMMP) on file, completed by the student's endocrinologist, addressing daily care, exercise, illness, and emergency situations.
> Glucagon training for nurse and at least two other school staff members. Glucagon kit accessible at all times.
> Permission to leave class for diabetes management without penalty. Time spent on diabetes management does not count toward absences or tardies.
> Modified PE participation as recommended by endocrinologist, with adjustments for blood-sugar monitoring before, during, and after activity.
> Excused absences for medical appointments that cannot be scheduled outside school hours. Student is provided make-up opportunities for any missed instruction.
> Field trips and overnight events — accommodations follow the student. School staff are trained or appropriate medical support is provided.
CARDIAC ACCOMMODATIONS (when applicable)
> Modified physical education based on cardiologist recommendations. Modifications may include: reduced intensity, no contact sports, low-impact activities, or alternative activities.
> Activity restrictions reviewed annually by the student's cardiologist with documentation provided to the school.
> Awareness of cardiac symptoms — staff trained to recognize signs of cardiac decompensation (significant breathlessness, chest pain, fainting) and respond appropriately.
> Make-up time for cardiology appointments that cannot be scheduled outside school hours.
> Stair limitations if recommended by cardiologist. Elevator access provided in multi-story buildings.
> Rest periods as needed for cardiac function — student may have access to a quiet space for short breaks.
GENERAL HEALTH AND ACCESSIBILITY
Medical accommodations
> Excused absences for medical appointments that cannot be scheduled outside school hours. Documentation provided. No academic penalty for medical absences.
> Make-up time for missed instruction during medical absences. Materials provided in advance when possible.
> Access to school nurse or trained staff for medication administration during school hours per Medication Administration Plan.
> Access to private space for medical management (changing CGM sensors, taking medications, resting during cardiac symptoms, etc.).
> Communication with medical providers as needed — school nurse may communicate directly with student's medical team for clarification or care coordination.
Physical and environmental
> Accessible classroom locations — student's classes located on the ground floor or near elevators when possible. Travel time between classes accommodated.
> Adjustable seating and desk to accommodate physical comfort and accessibility needs.
> Backup equipment for any technology the student depends on — Braille display, hearing aid, glucose monitor, etc.
Bathroom and self-care
> Bathroom access as needed without restriction. Student does not need to ask permission for medical-related bathroom use.
> Access to private space for personal care, medical care, or rest.
Mental health
> Counselor or social worker available for emotional support related to the medical situation. Counseling services included in IEP if needed.
> Permission to access counselor or quiet space during emotional difficulty without academic penalty.
> Mental health awareness — staff trained to recognize signs of distress (withdrawal, mood changes) and respond supportively.
SAFETY AND EMERGENCY
> Emergency medical contact information maintained current and accessible to all relevant staff.
> Emergency action plan for cardiac, diabetic, and other medical emergencies — known to all staff who interact with the student.
> Fire drill / evacuation accommodations — buddy system or designated assistant for safe evacuation, particularly given combined sensory limitations.
> Lockdown drill accommodations that account for the student's specific needs.
> Substitute teacher briefing — every substitute teacher receives a brief about the student's accommodations and emergency plan.
TRANSPORTATION
> Accessible school transportation — bus route accommodation if needed, escort to and from bus, audio cues for stops if appropriate.
> Curb-to-curb service if independent walking to bus stop is not safe.
PARTICIPATION AND INCLUSION
> Full participation in classroom activities with accommodations as needed. Student is not segregated unless there is a clear educational reason.
> Access to all clubs, electives, and extracurricular activities with accommodations as needed.
> Field trip participation with accommodations — equipment travels, transportation accessible, staff trained.
> Social-emotional support — peer education about disability when appropriate and with student/family consent.
> Anti-bullying provisions — explicit recognition that disability-related bullying is unacceptable, with intervention plan in place.
TRANSITION (for older students)
High school
> Vocational rehabilitation services engagement beginning at age [14 or as appropriate for state]. Vocational rehab counselor included in IEP team meetings.
> Career exploration adapted for disability — work experiences, career assessments, college planning.
> Self-advocacy instruction — explicit teaching of how to discuss disability and request accommodations as the student moves toward adulthood.
> Transition planning for post-secondary education or employment.
Post-secondary
For students moving into college: > Accommodation history documented in transition plan to support college disability services applications.
> Connection with college disability services initiated before graduation.
> Assistive technology familiarity ensures student is fluent before college.
SAMPLE LANGUAGE FOR SPECIFIC SITUATIONS
When the school says "we don't have a TVI"
> The school district will provide TVI services for [___] hours per week. The district may contract with regional cooperatives or outside providers if the district does not employ a TVI directly. Federal law requires the provision of necessary services regardless of staffing.
When the school resists accommodations
> All accommodations in this plan are based on documented medical and educational need as determined by the IEP team in consultation with the student's medical providers. The student's documented diagnoses include Alström Syndrome (OMIM #203800), a multi-system genetic condition causing progressive vision and hearing loss, type 2 diabetes, cardiomyopathy, and other complications.
When you need to escalate
If accommodations agreed upon aren't being delivered:
- Document specific failures in writing
- Request an IEP team meeting
- Engage state department of education advocacy if needed
- Contact disability rights organizations
- Consider a special education attorney for serious disputes
Templates for specific accommodations
Diabetes Medical Management Plan request
Date: ____________________ To: [School name and address] Re: Diabetes Medical Management Plan for [Student name, DOB] Dear [Principal/Nurse]: Our child [name] has Alström Syndrome with type 2 diabetes managed with [insulin / oral medications / other]. To support [name]'s participation at school, please find attached the Diabetes Medical Management Plan completed by [name]'s endocrinologist, [Dr. Name, Practice]. Per the DMMP and Section 504 of the Rehabilitation Act, we request the following accommodations to be incorporated into [name]'s 504 Plan or IEP: 1. Permission to test glucose and administer insulin during school day 2. Trained school nurse coverage with backup for substitute days 3. Snack and meal access for blood-sugar management 4. Glucagon training for at least two staff members 5. Modified PE per endocrinologist's recommendations 6. Field trip and overnight accommodations Please confirm receipt and schedule a meeting to finalize the plan. Sincerely, [Parent name] [Contact information]
Letter from medical provider supporting accommodations
[Medical practice letterhead] Date: ____________________ To Whom It May Concern: [Student name], DOB [date], has been under my care for Alström Syndrome, a rare multi-system genetic condition. [Name] has the following features that require school accommodations: [List relevant findings — vision, hearing, diabetes, cardiac, etc.] Specifically, [name] requires the following accommodations to fully participate in school: [List accommodations using the language above as appropriate] Alström Syndrome is a documented medical disability under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, and is on the Social Security Administration's Compassionate Allowances list. Please contact me with any questions. Sincerely, [Provider name, credentials] [Contact information]
Frequently Asked Questions
What if the school won't agree to specific accommodations?
Document the disagreement in writing. Request an IEP team meeting. Bring medical documentation supporting the accommodation. If still denied, formal dispute resolution (mediation, due process) is available. State parent advocacy organizations can help.
Can we modify the language to match our specific situation?
Yes — adapt as needed. The language here is a starting point, not a script.
How specific should accommodations be?
Specific is generally better. "Will be provided with assistance" is vague; "Will receive 5 hours per week of TVI services" is enforceable.
Should accommodations be reviewed annually?
IEPs are formally reviewed annually; 504 Plans typically annually as well. EHCPs in the UK are reviewed annually with a more comprehensive review every few years. Update as the student's needs change.
What about high-stakes testing accommodations?
Standardized tests like SAT, ACT, GRE, and AP exams require their own accommodation requests. The IEP/504 documentation supports those applications. Plan ahead — accommodation approval can take weeks.
Related reading
- School IEP and Accommodations for Alström Syndrome
- Vision Aids and Tech for Children With Alström
- Hearing Aids for Kids With Alström
- Type 2 Diabetes in Alström Syndrome
- Building Independence in a Child With Alström
- Transitioning to Adult Care in Alström
This template is for informational purposes and is not a substitute for legal advice. Special education law varies by jurisdiction; consult with a special education attorney for serious disputes.