How to Support Learning For Children With Vision Loss
Monday September 14, 2020
Most children with retinoblastoma experience some degree of vision loss that requires accommodations and support to reach their potential in school. Four vision professionals, who have experience of retinoblastoma, review the supports children may need, and what parents can do to help secure them.
Co-authors: Lori Baños, Jessica Givens, Shelly Howsare and Wendy Miller
The following article was written based on experience of the US education system. The principles and processes of support they describe are similar throughout much of the world, although systems vary by country. Ask your local education authority or child and family advocate for details of educational supports, assessment and application processes in your country.
This excellent summary of educational support available in the UK was written for the Childhood Eye Cancer Trust by Marie Lloyd, Rb Mum, WE C Hope co-founder, and visual impairment teacher.
This school year will look different for everyone. But, what if you have a child with vision loss due to retinoblastoma? Children who have had an enucleation and/or vision loss can still thrive and succeed in the classroom with appropriate supports.
Vision Development
Visual development continues into the early school years, and not all children will have perfect vision. Acuity for each child in any classroom can vary between 20/20 and 20/70, all of which fall under the range of “normal vision.”
A child with an acuity of 20/70 to 20/200 is considered to have “low vision” or “sight impaired” and may require support and possibly an IEP. An acuity above 20/200 is considered “legally blind” or “severely sight impaired”, and it is more likely this child will need specific supports and interventions to participate in the general education classroom.
In a child with 20/20 monocular vision, the visual field on the side of the blind eye will be reduced by 35%. Children usually adapt quickly, and some will learn to turn their head slightly to adjust their visual field, sacrificing 17 degrees on each side. The brain can quickly adjust to view the world in 3D (different from movie 3D) with monocular vision, learning to judge distances and the speed of objects almost as well as if two eyes were working normally. However, some children may struggle with depth perception or other issues and may benefit from early interventions to promote safe, independent mobility and confidence.
Establish Support Early
If you have had early intervention from a Teacher for the Visually Impaired, you already know what to consider, and have a good support system in place. When your child is diagnosed with retinoblastoma, there is potential for vision loss. Reach out to your local school district, education agency, or social services for guidance and request support services for your child. It is important to begin support services as early as possible to achieve the best possible outcomes and highest level of independence.
Sometimes, accessing services can be challenging. Often, agencies want a doctor’s report, then they will complete an assessment to consider how the disability affects the child’s ability to access their developmental milestones and education.
If you are new to this, your first step is to gather your team. Your ophthalmologist will provide a baseline guide for areas to assess. This written report may include acuity, field of vision, additional diagnoses and prognosis. Depending on the severity of vision loss, accommodations may be needed.
Possible Educational Team Members:
- Ophthalmologist
- Teacher for the Visually Impaired
- Orientation & Mobility Specialist
- Special Education Teacher
- Classroom Teacher
- Occupational Therapist
- Physical Therapist
- Speech Language Pathologist
- Principal/School Administrator
- Paraeducator
- Early Childhood Teacher
Create an Inclusive Experience
Your child should be included in the regular education classroom and participate in the regular education curriculum to the highest extent possible. Exclusion due to disability is still prevalent in some countries, but the majority of the world follows an inclusive education model. A similar process is followed in most countries to access support services.
Possible School Accommodations and Modifications:
- Preferential seating
- Large Print/Braille
- Lighting adjustments
- Reduced assignments
- Breaks for visual fatigue
- Alternative testing environment
- Additional time to complete school work/tests
- Copies of boardwork
- Assistive technology/low vision device (ex. CCTV or iPad)
- Rest eyes as needed due to visual fatigue
- Use of bookstand
- Larger work space to accommodate materials and technology
- Adapted materials (i.e. ruler, protractor)
- Bold line paper
- Auditory books
- Personal copy of materials
IEPs & 504/Additional Support Plans
Individualized Educational Plans (IEP) are written plans that outline the child’s individual strengths, needs, and preferences. An IEP is a collaborative document that includes teachers, administrators, service providers, the family or caregiver, and most importantly, the student. Goals are developed based on areas of need and a plan is put in place regarding frequency and delivery.
A 504/Additional Support Plan identifies appropriate accommodations and related services the student needs to ensure they can access their education. General education staff and building administration are responsible for developing and implementing an appropriate 504 accommodation plan.
To be eligible for Section 504 accommodation plans, students must meet three criteria:
The child must have: (1) A mental or physical impairment (2) which substantially limits (3) one or more major life activities.
Additional supports may be available such as:
- Individual and/or family therapy
- School counselor
- School Social workers
- School Nurse
Eligibility Process
Initially, an evaluation should be requested. You, along with your school staff, will determine areas to be assessed. It may be vision only (Expanded Core Curriculum), or may include other areas such as academics (math, reading, etc.) or OT, PT, etc.
The evaluation will begin with a review of records. This typically includes medical records in addition to any school history. Observations in multiple settings will take place on more than one occasion. Interviews with your family and others who spend time with your child will be an important part of the evaluation. Finally, formal testing and assessment will take place in the areas of need. The child’s strengths, interests and preferences will be considered.
The team will determine if the child’s needs can be met in the general education setting or if they will need direct or indirect support services.
Direct services may include instruction in an area of need as, well as 1:1 support.
Indirect services may include accommodations and modifications to curriculum, setting, environment, procedures, etc.
If the child is deemed eligible for special education, an Individualized Education Plan (IEP) will be developed. If the child does not need special education services but does need accommodations, a 504 Accommodation Support Plan will be developed.
Depending on level of functional vision, it is possible the child will not need any additional support outside of what is traditionally provided in the general education classroom, particularly in developed countries.
Expanded Core Curriculum
The Expanded Core Curriculum (ECC) is the body of knowledge and skills that are needed by students with visual impairments. The areas of the ECC include
- Compensatory (Braille & tactile skills, communication modes and functional academic skills),
- Orientation and Mobility (independent travel),
- Social Interaction,
- Independent Living,
- Assistive Technology,
- Recreation and Leisure,
- Career Education,
- Self Determination, and
- Sensory Efficiency.
Students with visual impairments need the Expanded Core Curriculum in addition to the core academic curriculum of general education. Throughout their lives, sighted children have visual experiences by which they learn concepts casually or incidentally. Students with vision loss often miss or learn concepts in an incomplete or distorted way. As they provide a foundation for future learning, these concepts must be explicitly and systematically taught to children with visual impairments.
The ECC should be used as a framework for assessing students, planning individual goals and providing instruction. Since the skills that comprise the ECC are used throughout the student’s day, they must be incorporated into every area of the core curriculum and supported by all those who instruct the student, including para-educators, teachers and parents.
Virtual Learning
Due to Covid-19 global pandemic and health emergency, some school districts are opting for online learning rather than in-person learning, in response to local virus spikes. In order for online learning to be effective, the team (school, parents, student, providers) must consider each student’s individual needs. This should include available technology (distance meeting tools, student assistive technology and online learning websites), the student’s technology skills, materials available at home, the home workspace and any adult support required.
- Technology for virtual learning may include distance meeting tools (i.e. Zoom, Google Meet, Face Time) and online learning websites.
- Student assistive technology may include: Electronic note taker, screen reader, magnification, electronic magnifier, embosser, Perkins braillewriter, laptop, etc.
- Materials may include: embossed Braille, electronic Braille, tactile graphics, print hard copy, electronic print.
There are some challenges to creating an effective online learning environment. Perhaps the most important consideration is the student’s skills and independence in using the technology. If the student is not independent, adult support will be required.
In addition, it will be vital to establish an appropriate workspace for the student to ensure easy access to materials and technology. A teacher will be unable to fully evaluate progress of a student working on Braille and tactile skills if they cannot see the student’s hands on the tactile materials. It may be necessary to adjust the camera, or add an additional camera.
Remote orientation and mobility services will be most challenging. This will require thoughtful collaboration between parent, student and the orientation and mobility specialist.
As a parent, it will be important to advocate for your child. Specific skills will be necessary to participate fully in online learning. The student’s agreed accommodations and any goals and support services will need to be met via any remote learning setup Remember, however, that all students are learning in a new way and we are all navigating through uncharted waters together.
Please recognize that if your child’s school is operating virtual learning measures, the teachers and support providers are likely to be feeling considerable strain. Stay in close communication, be patient, and share feedback often about what is and is not working for your child. If things don’t go as planned, talk with the teachers and support providers to identify the issues and how they can be resolved. Working together, with tolerance and grace, we can find the right way forward for each child in these new and difficult times.
Working Together For Your Child
The severity of a child’s vision impairment and its effect on their ability to access and participate in the general education program will determine their need for accommodations and supports. From alternative formats such as Braille or Large Print, to training in the use of a cane. Children with only one sighted eye sometimes struggle with depth perception problems. This can improve with maturity, but strategies to assist the child in safe mobility may be needed.
All children are unique and it’s important to discuss any vision concerns with the ophthalmologist, rather than comparing with other children.
Many people will be involved in creating the best plan for your child – including your child themselves. The process can seem complex and long, but the rewards are great. When children with vision loss are given the supports they need to thrive in the classroom, they become free to discover their potential, to grow in confidence, and live life fully.
About The Authors
Lori Baños lives in Iowa with her husband, Juan. She is an active board member of World Eye Cancer Hope and is the parent of an adult survivor of bilateral Retinoblastoma. On October 24, 2010, Lori created the Facebook group, Rb Moms, for mothers of children with Retinoblastoma. She is starting her 13th year as an itinerant Teacher of Students with Visual Impairments (TVI) and Certified Orientation and Mobility Specialist.
Jessica Givens lives in St Louis, MO with her husband and three boys. Jessica has worked for 22 years in the public school system as an Orientation and Mobility Specialist. Jessica is a retinoblastoma survivor as well as are her two youngest boys.
Shelly Howsare lives in West Branch, IA with her husband and 2 dogs. Shelly has been working as an itinerant Teacher of Students with Visual Impairments (TVI) for 11 years. Shelly decided to become a TVI after her 18 month old nephew lost both eyes to retinoblastoma. Shelly is also a U.S. Navy veteran and cancer survivor.
Wendy Miller lives in Center Point, IA with her husband and 4 children. Wendy has been working as an Itinerant Teacher of Students with Visual Impairments (TVI) for 7 years. Wendy was inspired to become a TVI, because her dad is a retired TVI and her mom and sister were both born with congenital cataracts.
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